Hope for Punya (A Rare Condition and Searching for Answers)

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  • เผยแพร่เมื่อ 22 ส.ค. 2024
  • Punya is diagnosed with Phelan-Mcdermid syndrome and does not currently speak. Ananya, her sister, is dedicated to learning how Punya communicates so the two can better connect. Ananya even sometimes wears Punya's old dresses in order to feel close to her beloved sister
    Two years ago Punya started having seizures that have severely impacted her life. Her family is now searching for answers.
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ความคิดเห็น • 1.2K

  • @SpecialBooksbySpecialKids
    @SpecialBooksbySpecialKids  2 ปีที่แล้ว +2100

    Hi everyone! I wanted to share a bit of the "behind the scenes" from when I film with siblings, particularly children. When communicating with each child, I make sure to ask them questions pertaining to themselves. Such as "What's your favorite food?" or "What's your favorite thing to do?" I want to make every sure each kid knows I have a genuine interest in them. Not all of this footage is included in the final cut, but I just wanted to share this bit of info as I think it is important that we make all children, disabled and nondisabled, feel loved and accepted!

    • @naomihope8278
      @naomihope8278 2 ปีที่แล้ว +10

      Maybe you can interview me four old when he's a lil older

    • @AqxCherry
      @AqxCherry 2 ปีที่แล้ว +3

      Hi

    • @shaymary5247
      @shaymary5247 2 ปีที่แล้ว +19

      Bless u & ur beautiful heart. It's ppl like u that bring more hope2 those in such hopeless circumstances. Thx4 being so loving, patient, & helpful. U move many mountains!!! 💜🙏☺

    • @user-ws7jy6dq7f
      @user-ws7jy6dq7f 2 ปีที่แล้ว +6

      Спасибо за вашу работу! Смотрю каждое видео!

    • @sophieegana8994
      @sophieegana8994 2 ปีที่แล้ว +18

      One of my favorite animals is the crab 🦀 and I love the younger sister, she have a very loving heart and she cares a lot about her sister Punya.

  • @fannyfreckle
    @fannyfreckle 2 ปีที่แล้ว +1344

    I love how the mom praises the younger daughter and calls out her efforts and even thanks her. It can be easy for a younger child to get lost in the needs of a sibling with a lot of demands. Then the dad focusing so much love and praise on the wife. Seems like a lot of love all around in this home. ❤️

    • @ha11ejo3L073
      @ha11ejo3L073 2 ปีที่แล้ว +29

      Exactly what I was thinking. Such a loving home with genuine and emotionally supportive family members.

    • @AnwesaChaudhury
      @AnwesaChaudhury 2 ปีที่แล้ว +3

      Inspite of having one child that is disabled they still try to live a normal life

    • @IkesPimpHand
      @IkesPimpHand 2 ปีที่แล้ว +1

      Amd the father gets absolutely no credit except for when he praises women,how shocking

    • @IkesPimpHand
      @IkesPimpHand 2 ปีที่แล้ว +1

      @inspecteur gadjet oh i make perfect sense. Keep pretending.

    • @IkesPimpHand
      @IkesPimpHand 2 ปีที่แล้ว +1

      @inspecteur gadjet you off your meds?

  • @SpoonfulofCinnamon
    @SpoonfulofCinnamon 2 ปีที่แล้ว +2196

    I provided personal care for Punya for a few weeks back in 2019. The family truly loves and supports each other.
    The mother is a total super mom, off screen as well! She knows Punya like the back of her hand. Always advocating for her, taking her places, and instructing me with the best tips for caring for her girl! ❤

    • @rianneashleigh808
      @rianneashleigh808 2 ปีที่แล้ว +30

      Yes, she is!!! Super amazing.

    • @MaximusLuver
      @MaximusLuver 2 ปีที่แล้ว +44

      Thank you for commenting! Love this

    • @melissaj6982
      @melissaj6982 2 ปีที่แล้ว +34

      Wow! Really?! I’d love to help care for Punya and her sister. The whole family! What a great experience that must’ve been.

    • @LilyOfTheTower
      @LilyOfTheTower 2 ปีที่แล้ว +39

      I really felt the dedication and love through the video but its very heart warming to have confirmation of how truly lovely this family is :)
      That's so sweet that you helped them. Caregivers of all kinds have the biggest hearts in this world. ♥

    • @GabrielleCarbonneau
      @GabrielleCarbonneau 2 ปีที่แล้ว +19

      So nice to hear that. I can totally feel that from here. 💕

  • @I-AmWealthy-Bee
    @I-AmWealthy-Bee 2 ปีที่แล้ว +1672

    The little sister is such bubbly and so energetic. She has the best little sister
    If I had a little sister like that. She would be able to help me navigate. And huge areas. And everywhere I go. She'll make sure that I don't, trip over anything LOL thanks everyone for so many likes. It really warms my heart.

    • @Curtis.Carpenter
      @Curtis.Carpenter 2 ปีที่แล้ว +27

      Punya couldnt have a better more positive sister ♡

    • @amyd7794
      @amyd7794 2 ปีที่แล้ว +26

      What a sparkly-eyed little treasure!

    • @davidsaintcyr3384
      @davidsaintcyr3384 2 ปีที่แล้ว +8

      Yeah. Little sis rules, I hope i get a daughter like that!

    • @SusanHeart
      @SusanHeart 2 ปีที่แล้ว +5

      How traumatic to see your daughter or sis have a seizure and not be able to soothe her.

    • @Penny-bt4gc
      @Penny-bt4gc 2 ปีที่แล้ว +4

      She’s adorable

  • @ace.of.space.
    @ace.of.space. 2 ปีที่แล้ว +1684

    as a child of South Asian immigrants who do not understand my mental illness, and someone has seen a lot of shame and taboo around disability in our community, it really warms my heart to see this family full of support and understanding for their disabled daughter.

    • @Saif-zf9vb
      @Saif-zf9vb 2 ปีที่แล้ว +56

      There are tons of people in this world who back you buddy. Mental illness is real whether people want to believe it or not. I got you homie, 100%

    • @Abhishek-pc6ub
      @Abhishek-pc6ub 2 ปีที่แล้ว +18

      I also had mental illness ... ANd I have found the best cure ..for me is to cut off from internet , the movies,songs,youtube ..everything which are on internet .. go to park , with or without friends ..
      Actually we watch so much youtube ,listen to songs ,movies ..we don;t realize that they all just put strain on our mind and body ... you can try this ... try this for like 1 month or even just a week ..I know it will be hard to cutoff from songs,movies,youtube, internet .. but belive me its totally worth it .. I do this often .. ON weekends Saturday and Sunday ..I always take break from internet ...
      Try this , its hard ..but totally worth it .. I bet u .. I am not saying u to retire from internet ..when u feel like yeah now I feel good after week or month ..come back on internet .. AS I have to for work ...

    • @martybob55
      @martybob55 2 ปีที่แล้ว +17

      I’m so sorry that your challenges are not accepted by your family. I hope that you are able to be surrounded by loving, understanding, supportive friends in your community. I realize it may be a cultural thing, but I believe that we are all deserving of love and compassion… and a sprinkling of joy mixed in!

    • @satanramirezramos8367
      @satanramirezramos8367 2 ปีที่แล้ว +10

      I have social anxiety and my family didnt believe. I had to tell them but still they don't know what I go through

    • @mintyfresh8896
      @mintyfresh8896 2 ปีที่แล้ว +3

      ❤️💛

  • @Keziah2447178
    @Keziah2447178 2 ปีที่แล้ว +311

    I love the way she’s just big chilling on her dads lap. Looking so comfortable. This family is so wholesome.

  • @SabrinaHawk
    @SabrinaHawk 2 ปีที่แล้ว +596

    The sister answer about her hope for punaya was for her not to have a seizure- melted my heart you can tell she wants to help her family.

  • @kforcer
    @kforcer 2 ปีที่แล้ว +833

    She has such a sweet, mature younger sister. That's beautiful to see. Maybe she brought out the best in her little sister.

    • @mothermarie6057
      @mothermarie6057 2 ปีที่แล้ว +17

      Yesss and I see Punya listening and getting happy when Sister is saying nice and happy things about her too. 🥰

  • @anatomydead
    @anatomydead 2 ปีที่แล้ว +669

    Omg the little sister is so eloquent, empathic and mature for her age, she's gonna be an intellectual activist woman, mark my words.

    • @basedsouljah
      @basedsouljah 2 ปีที่แล้ว +23

      now lets not wish that on the poor sweet girl, tired law student. lolol

    • @inactiveuser555
      @inactiveuser555 ปีที่แล้ว +5

      There’s a holy GOD in Heaven, Who created you and I for His glory, but our sins have separated us from Him. the wages of sin is DEATH, but the FREE Gift of GOD is eternal life in CHRIST the LORD. in love, CHRIST died for our sins and was raised to life for our justification. repent, stop living in sin, and believe in the Gospel.

    • @funkunko
      @funkunko 10 หลายเดือนก่อน +3

      @@inactiveuser555shutup

    • @stepht7508
      @stepht7508 9 หลายเดือนก่อน +1

      So strange...I felt the same thing.

  • @sizzle8558
    @sizzle8558 2 ปีที่แล้ว +600

    I loved the dad’s observation about why she stays in her room much more now because she doesn’t feel other environments are safe. That is something a lot of parents would see or understand and it would frustrate them and they would put too much effort into trying to force her out of her room.

    • @pennyp7382
      @pennyp7382 2 ปีที่แล้ว +4

      Very beautiful.. I noticed that too. He really tries to empathize. The entire family eminates love and what family should be. Got all choked up watching as I do so often on SBSK. A good part of the internet.

  • @newchapterasmr
    @newchapterasmr 2 ปีที่แล้ว +337

    Ananya put such a big smile on my face, she’s mature for her age, understanding, bubbly, such a sweet kid

    • @Curtis.Carpenter
      @Curtis.Carpenter 2 ปีที่แล้ว +22

      she seemed extremely aware and logical.. it was kinda of shocking. as a white guy ive got to admit, indian families seem very close and caring/family type of people. her father is a very caring man and its amazing she has them. i love indian culture and their appreciation for eachother.

    • @newchapterasmr
      @newchapterasmr 2 ปีที่แล้ว +9

      @@Curtis.Carpenter I thought so too, they seem to have a lot of love for each other. And they did a great job raising their girls

    • @taraalan1131
      @taraalan1131 2 ปีที่แล้ว +5

      She’s extremely intelligent.

  • @hayleyallover
    @hayleyallover 2 ปีที่แล้ว +514

    Her family just exudes love and acceptance! Punyas little sister is such a sweet angel ❤️

  • @user-tk7kz1fl2r
    @user-tk7kz1fl2r 2 ปีที่แล้ว +346

    This is awesome. I'm Indian and am so pleased to not see one hateful comment about Indians in the comments section! Now that is rare! I love all the videos from this channel

    • @SpecialBooksbySpecialKids
      @SpecialBooksbySpecialKids  2 ปีที่แล้ว +187

      You are loved and respected here!!! :)

    • @sarac.3259
      @sarac.3259 2 ปีที่แล้ว +51

      D, I am really sorry it is rare. That is not good.
      Our family have some fabulous Indian friends and acquaintances - all so polite and eloquent, and full of joy, like this lovely family. May you always have the respect you deserve and stay safe and well.

    • @jennthurston364
      @jennthurston364 2 ปีที่แล้ว +45

      I love the Indian culture. I find them very polite and respectful with amazing sense of humor. The children are very polite and respectful and that comes from great parenting.

    • @stacydavis1682
      @stacydavis1682 2 ปีที่แล้ว +19

      D, how sad that we live in such a hateful society. In my life, I treat everybody the way that I want to be treated.

    • @ZsiZsiSzabad
      @ZsiZsiSzabad 2 ปีที่แล้ว +28

      It breaks my heart that this is rare for you 😢 The friends I’ve made from India are truly some of the most selfless, thoughtful, intelligent, kind and interesting people I’ve ever known. Your home country is BEAUTIFUL and AMAZING- from the colors to the music to the clothing to the culture to the food…. Definitely worthy of praise and celebration

  • @brigs1856
    @brigs1856 2 ปีที่แล้ว +253

    My daughter is 3.5yrs and also has Phelan McDermid Syndrome. She cannot walk yet but when she does, she'll be wearing beautiful dresses like Punya ❤️

    • @mosheymama4866
      @mosheymama4866 2 ปีที่แล้ว +10

      Tons of love to your sweetie xoxo

    • @Thebeezzkneezz.
      @Thebeezzkneezz. 2 ปีที่แล้ว +6

      Why can't she wear the dresses now? You don't have to walk to wear a pretty dress

    • @r.coffman1431
      @r.coffman1431 2 ปีที่แล้ว +4

      @@Thebeezzkneezz. dresses are difficult to crawl in.. and when laying/sitting, they ride up. It's about comfort

    • @Thebeezzkneezz.
      @Thebeezzkneezz. 2 ปีที่แล้ว

      @@r.coffman1431 dresses are the most comfy what are you talking about.
      0 restrictions and when they crawl it won't fall off like pants do
      Dresses don't ride up... they literally go down with gravity. It dosnt get bunched and ride up like jeans do
      if your dresses are riding up they must be magic

  • @TheKutlessrock
    @TheKutlessrock 2 ปีที่แล้ว +1123

    Chris, I love how you took a moment to show Ananya that she is an important individual. Not in her sister's shadow. Overall a wonderful family, I hope they find a more comfortable way of living.
    Edit: I've added Ananya's name as I didn't catch it the first time watching the video.

    • @brettandkelseyray1049
      @brettandkelseyray1049 2 ปีที่แล้ว +27

      He does this with all families and love it!

    • @anniebragg11
      @anniebragg11 2 ปีที่แล้ว +32

      yes, he does such an nice job of including everyone. i really love that.

    • @jesussavedme6260
      @jesussavedme6260 2 ปีที่แล้ว +3

      Jesus loves you 😊😊 Jesus loves you all, He can remove your emptiness and pain if you let Him. He loves you with a love you didn’t know existed. Give Him a chance, please. He loves you. Do not end your life, please stay. You are so precious, wanted and loved. If you don’t want your life - give it to Jesus. All these lies and torments you hear - flip it and it is the truth! Listen to “Voice of God” and “As you find me” on youtube. Also please listen to: Dan Mohler, Kenneth Hagin, Todd White and Kathryn Kullmann. I hope to see you in heaven one day

    • @samuelsprings7245
      @samuelsprings7245 2 ปีที่แล้ว

      @@jesussavedme6260 Amen

    • @AnonymousAnonymous-yq4cu
      @AnonymousAnonymous-yq4cu 2 ปีที่แล้ว

      Ananya. Her name is Ananya, not "Punya's sister"

  • @widethigh6ix9ine
    @widethigh6ix9ine 2 ปีที่แล้ว +556

    Ananya (the little sister, I may have spelled it wrong) has so clearly picked up the warmth of their family and just beams it out into the world. Punya is lucky to have such a loyal family want to be so close to her. This series gives me hope for humanity, thanks for your hard work Chris!

    • @mothermarie6057
      @mothermarie6057 2 ปีที่แล้ว +10

      Yessss! SBSK work is EPIC! It’s already changed the world forever 🥰

    • @pennyp7382
      @pennyp7382 2 ปีที่แล้ว

      I couldn't agree more.

  • @vjc25
    @vjc25 2 ปีที่แล้ว +365

    Beautiful family. Punya’s little sister is such a sweet girl.

  • @Ashley8183
    @Ashley8183 2 ปีที่แล้ว +273

    This family is incredible. They exude such a good vibe. Full of love, acceptance and really in tune with each other.

    • @iamnedd92
      @iamnedd92 2 ปีที่แล้ว +4

      very south asian

    • @ZsiZsiSzabad
      @ZsiZsiSzabad 2 ปีที่แล้ว +1

      Yes!!! They really inspired me, such a wealth of unconditional love and deep connection between them all ❤️

  • @jennthurston364
    @jennthurston364 2 ปีที่แล้ว +136

    "That's not about Punya!" Melted my heart. Such a loving sister and family. Thank you for sharing Punya's story!

  • @rianneashleigh808
    @rianneashleigh808 2 ปีที่แล้ว +103

    HI PUNYA!!! IT'S AMAYA'S MOM. WE MISS YOU!!!!! ❤️🧡💛💚💙💜 These girls were partners in crime years back. I love this family! I can't believe I just stumbled upon this video in the wild!!! I feel like she recognizes me. I still say hi, but I know she doesn't respond typically. She's so much like my daughter with Rett, so I know that she responds with her heart. I love to see her sibling! What an amazing sister.
    Topamax seems to be working for my daughter's seizures, and I am going to pray, send positive spiritual energy, that the right combination is found to help Punya. I know what that's like. 💔
    What!!!!!! SBSK, Punya gave you a smile?!?! Going on 6 years and still no smile for me yet. I'll have to be even friendlier next time. You have no idea how special you are!!!

    • @rubyreduxx
      @rubyreduxx 2 ปีที่แล้ว +4

      @Special Books by Special Kids wow Hope you guys reconnected thru this

  • @cassiesingleton5903
    @cassiesingleton5903 2 ปีที่แล้ว +114

    I have seizures too. It is stressful, sad, and sometimes painful, you're right about that. BUT just know, one of the best feelings in the world is having my parents and family around me when I wake up. It makes me feel loved and cared for. She may not be able to tell you in the same way that I can, but I'm positive she feels the same relief and safety in your arms that I experience too. A families love is the best medicine! Keep going :) xo

  • @mindlessthenie
    @mindlessthenie 2 ปีที่แล้ว +164

    I love that he made sure to ask Ananya about her and gaged her response and then validated her as an individual. Ananya is an amazingly empathic young lady and her dedication to Punya is beautiful, however she deservers to grow up knowing she's worthy of all the same love, affection, and attention, that Punya is granted. This whole interview made my heart melt, as usual thank you everyone 💜

    • @Србомбоница86
      @Србомбоница86 2 ปีที่แล้ว

      She can never receive the same attention ,she is not disabled

    • @mindlessthenie
      @mindlessthenie 2 ปีที่แล้ว +7

      @@Србомбоница86 do you mean society will not hand her the same attention? She can have as much attention as anyone disabled or not, it's how those around her provide it to her that changes not her worth. 💛💜

    • @Србомбоница86
      @Србомбоница86 2 ปีที่แล้ว +4

      @@mindlessthenie no ,I just mean sadly she will always be put second in her family

    • @mindlessthenie
      @mindlessthenie 2 ปีที่แล้ว +4

      @@Србомбоница86 I understand what you're saying now. Yes, you are sadly correct about this.

    • @rikhmjustsomeguywithmousta4971
      @rikhmjustsomeguywithmousta4971 2 ปีที่แล้ว

      @@Србомбоница86 kinda true

  • @kyf_
    @kyf_ 2 ปีที่แล้ว +264

    "She has a way to communicate which is to smile"... yesterday i walked past some kids playing basketball and their ball came my way, so i quickly just grabbed it and gave it back to a kid that walked towards me to take it. All we did was smile to each other for a second before i left. That moment trully made my day. So Punya, might not be able to talk, but she can communicate with the most beautiful way possible in my opinion ❤

    • @SR-pw6pi
      @SR-pw6pi 2 ปีที่แล้ว

      You're right.. it's not difficult to communicate with a child. It's always comfortable around children.

    • @salutoitoi
      @salutoitoi 2 ปีที่แล้ว +2

      Some years ago, I was in a depressed mood, I was passing a bridge and that guy, I never saw before, just put his best smile and asked me if all was ok. I thank him because it made my day, his smile was so communicative that I still remember it today

  • @LeedleLee457
    @LeedleLee457 2 ปีที่แล้ว +130

    10:18 "As old as my dad? That would be very old"
    Savage 🤣
    Such a lovely family though!

    • @debbiethemadbee
      @debbiethemadbee 2 ปีที่แล้ว +7

      Young kids are like that. I have a friend who says that her 7yo brother calls her “old”. There’s an age gap and she’s in her 20s.

  • @kitandsons173
    @kitandsons173 2 ปีที่แล้ว +166

    Special Books is one of the best channels on TH-cam. It actually helps to make the world a better place. Another great video, another great family. Thank you for your hard work!!!

    • @mikaylabansie9512
      @mikaylabansie9512 2 ปีที่แล้ว +3

      It oozes love and respect. Wish the world treated and treasured disabled people the way this You Tuber does videos❤

  • @mashameddiaries1111
    @mashameddiaries1111 2 ปีที่แล้ว +75

    She is an Indian and I'm a Sri Lankan. In my language Punya means good deeds or something like filled with good......that name suits you girl ❤️.... And also you are such a lucky girl to have such a loving family. I love this channel so much. Chris you are an angel on this earth.... People like you are really rare ❤️

    • @electricfil
      @electricfil 2 ปีที่แล้ว +1

      💚✌

    • @debbiethemadbee
      @debbiethemadbee 2 ปีที่แล้ว

      What about her sister? 😊

    • @mashameddiaries1111
      @mashameddiaries1111 2 ปีที่แล้ว +1

      of course she is too a 🙂cute little angel....I just mentioned Punya because of the meaning of that name...

    • @Ana-si7lz
      @Ana-si7lz 2 ปีที่แล้ว

      @@mashameddiaries1111 what's meaning of her sister's name? 😊

    • @mashameddiaries1111
      @mashameddiaries1111 2 ปีที่แล้ว +1

      @@Ana-si7lz her name is Ananya right?? Actually It's not a word from my language, Sinhala...Hindi and Sinhala have so many similar words like Punya but Ananya is not there in our language...so I'm not familiar with it. I wish I could know the meaning of that name too.

  • @megczaban6814
    @megczaban6814 2 ปีที่แล้ว +166

    I see myself in little Ananya. I don’t think I realized it as a kid but so much energy got put into my older sister who is autistic that I often just felt like “Catherine’s little sister who’s so patient and helpful” and not Megan the six year old. Siblings of disabled people need to know people see them

    • @absolutelyridiculous6743
      @absolutelyridiculous6743 ปีที่แล้ว +1

      Thank you for your input, I will keep your words in my mind so I can help acknowledge the siblings as well.

    • @moorgrass22
      @moorgrass22 ปีที่แล้ว +1

      ❤️

  • @mannk8088
    @mannk8088 2 ปีที่แล้ว +82

    As a Doctor from India, I really want to work with you some day Chris. Have been following your channel since a very long time and..... I relate to your work a lot.
    Thank you for Doing the work that you are Doing.
    In India we need people to be more informed. There is still lottt of ignorance and insensitivity towards specially abled kids.
    Hope to work with you guys someday. 😇

  • @whalefuhk
    @whalefuhk 2 ปีที่แล้ว +82

    One of the most GORGEOUS families INSIDE AND OUT. I love how supportive they are of Punya. 🖤🥰

  • @TheLastProzacNation
    @TheLastProzacNation 2 ปีที่แล้ว +148

    This family is amazing. I can’t get over how precious they all are. The vibes they give off are those of pure humanity, kindness, warmth. They’re like a hug in human form. Punya could have not chosen a better family to be born into, and I hope she manages to get a miracle combination so she could regain her personality and continue to be happy!

  • @SandyNaani
    @SandyNaani 2 ปีที่แล้ว +103

    What a beautiful family. They are all gorgeous

  • @lucidchem
    @lucidchem 2 ปีที่แล้ว +34

    I know it's always implied, but I think it's important to highlight. I see lots of comments about how wonderful, kind and loving this family is, and these comments have 30 or 50 likes, and that means that there are 30 or 50 people that had the same impression and would've left the same comment. So behind every kind word and awe-inspiring phase stands a whole crowd of people, and not a single person, as it can seem. I want the family to know that.

  • @hoodlum9505
    @hoodlum9505 2 ปีที่แล้ว +145

    She is so smart and cute, I feal sorry for her, I wish she didn't have so many seizures :(. Your in my prayers Punya and Punyas' family❤❤❤

    • @rachaelnelson3810
      @rachaelnelson3810 2 ปีที่แล้ว +1

      Oils some helps stops them sounds like she has autism

    • @MyLifeInTheDesert
      @MyLifeInTheDesert 2 ปีที่แล้ว +5

      @@rachaelnelson3810 No, this is often confused with autism. That is not what she has.

    • @amandacharlebois9295
      @amandacharlebois9295 2 ปีที่แล้ว +1

      wait who's smart and cute? punya or her adorable little sister?

  • @tbjas
    @tbjas 2 ปีที่แล้ว +99

    Whenever i see 'normal' siblings in these videos they always seem way more mature than others their age. That's really refreshing to see, such a young person having a better understanding of what's going on, how people should behave, what's good/bad. Adults can learn from that.
    These videos are awesome and this channel is one of the best, if not the best on TH-cam. No judgement, always transparent, let people be who they are and treat everyone equally. That's how it should be done.
    Have a happy day/night everyone.

    • @giraffe1219
      @giraffe1219 2 ปีที่แล้ว +5

      I can’t think of any situation in which a child would be mature for their age that isn’t caused by a stressful situation. It’s a very bittersweet thing. Because as you said they have a better understanding but it’s also unfortunate that they’re not able to fully live as a kid, as a kid their age.
      So yes while it is good in a lot of ways it’s important to remember it is a result of stress and necessity. Luckily Ananya seems to have a good support system so she will probably have a healthier way of handling it.

  • @chloepoudrier9309
    @chloepoudrier9309 2 ปีที่แล้ว +77

    I have temporal lobe epilepsy, and whenever I've had tonic clonic seizures I don't remember them at all. It's like time is lost, and my parents tell me I had a seizure and I had no clue. I pray and hope that Punya doesn't remember her seizures, but I know seizures are different for everyone. However, my hope is that me being able to communicate that I don't remember or feel them helps soothe her family's concerns ❤️

    • @shpup
      @shpup 2 ปีที่แล้ว +1

      I have temporal lobe epilepsy too and I don't remember mine either. I remember the moments right before and right after, I can sort of feel myself starting to have a seizure and then im gone. im grateful for that, in a way it's almost scarier for the people around to witness it than it is for me. I think its more common to not remember them, luckily. it's tough when she has no way of communicating whether or not that's the case

  • @s1fl
    @s1fl 2 ปีที่แล้ว +86

    Beautiful family. I hope that the parents see in each other the gold they've found in each other. They both are kind, thoughtful and strong. We should all aim to be like that.

  • @gmmpiper
    @gmmpiper 2 ปีที่แล้ว +55

    I really appreciate punya’s family being so open and honest with their answers. Not losing hope is something we can all definitely take away from this amazing interview. Thanks Chris!

  • @youcanthandletheheat
    @youcanthandletheheat ปีที่แล้ว +4

    I love how at her age she said her parents should take care of themselves more too. What an insightful young girl. What a bright and promising future she has. This is what love does, creates amazing kids.

  • @Semiotichazey
    @Semiotichazey 2 ปีที่แล้ว +35

    I just want to say that the entire family is just wonderful. Everyone talks about how lovely Ananya is, and it really is true, but the parents are also terrific people.

  • @moonsnow1942
    @moonsnow1942 2 ปีที่แล้ว +29

    My daughter has Quadriplegic Infintile Cerebral Palsey. She is an extreme daddies girl, I'm so happy she has a present and loving father. Special needs children don't just need care. They need love from both parents for the healthiest life.

  • @Stanzafly
    @Stanzafly 2 ปีที่แล้ว +110

    What a wonderful group of people. The family is so cheerful and gracious. Perhaps if Punya had a wheelchair to facilitate leaving the house without the risk of falling, she would feel more secure when leaving! Anyways, I wish y'all the very best. Good luck!

    • @divahc1
      @divahc1 2 ปีที่แล้ว +2

      Yes, and a pretty helmet to protect her head.

    • @rianneashleigh808
      @rianneashleigh808 2 ปีที่แล้ว +14

      She has a helmet and a wheelchair. You can't see it in the video. The family works so hard to keep her mobile. I respect that because I was kind of lazy and went with the chair. Punya walks much better than my daughter. She also used to bike up and down the halls.

    • @divahc1
      @divahc1 2 ปีที่แล้ว +4

      @@rianneashleigh808 Thank you for telling me. I was concerned as they mentioned quite a few times that she was hurting her head when she fell.

    • @Stanzafly
      @Stanzafly 2 ปีที่แล้ว

      @@rianneashleigh808 oh I totally didn't notice! I assumed they probably had already thought of it but you never know.

    • @philhobrla8489
      @philhobrla8489 2 ปีที่แล้ว +4

      @@rianneashleigh808 I know you’re ‘half-joking’ when you say “lazy,” and I have similar sentiments about some of my decisions in self-advocacy - ultimately I have had to remind myself that, then and now, I am doing the best I can with resources and circumstances handed me by my life. I hope you and your daughter are doing well.

  • @TheeBratzDollxox
    @TheeBratzDollxox 2 ปีที่แล้ว +35

    It’s still so surreal to come to these videos and see comments still 😭😭 they’re such a wonderful loving family! 💖💖

  • @linkedinlove106
    @linkedinlove106 2 ปีที่แล้ว +15

    That little girl is exceptionally articulate and compassionate - a rare combination. I have tremendous respect for the parents - it has to be heartbreaking for them and yet they smile. What a lesson for the world.

  • @a.camacho4942
    @a.camacho4942 2 ปีที่แล้ว +36

    Awe Ananya cares so much about her sister! I find it so fascinating how she’s so smart and has matured mentally, wanting to help her sister in the future and her ability to understand so much, my heart when she was like I think they should also take care of themselves a little bit more 🥺🥺💕💜

  • @harshmnr
    @harshmnr 2 ปีที่แล้ว +158

    Love how the sister says her parents need to take care of themselves more. 😂💚
    ~:~

    • @aandrus2169
      @aandrus2169 2 ปีที่แล้ว +18

      That was especially profound. What a wonderful daughter. I used to work for an agency that provided respite care through the county for parents of disabled children like Punya. I really hope they have access to such a thing. I've had a 18 year old sit on my lap like Punya does. It's the most heartwarming thing even if they are heavy and you can't see anything around them and feel squished. Lol. I felt so special when that happened. ❤❤❤

    • @ashlieghdeeble9112
      @ashlieghdeeble9112 2 ปีที่แล้ว +8

      I thought that was really sweet that she can see that her parents needs to take care and be happy as well.

    • @yeahimashley9515
      @yeahimashley9515 2 ปีที่แล้ว +6

      Right, so thoughtful and kind.

  • @zachbonney7372
    @zachbonney7372 2 ปีที่แล้ว +34

    Such a beautiful and loving family! Punya is lucky to have such a clearly caring and loving younger sister.

  • @Juju-tb8vs
    @Juju-tb8vs 2 ปีที่แล้ว +19

    The kind of love and empathy her parents have for her is so amazing and she deserves every bit of it. The love in this family is overwhelming.

  • @JaysLifee
    @JaysLifee 2 ปีที่แล้ว +48

    My daughter has cancer, the doctors at the hospital have seen me there every day from morning till night 46 days Straight and going.... When the little sister said her parents need to take care of them self more I finally understand coming from her and not the doctors at the CCU unit in the hospital.. I hope this beautiful family finds what they are looking for. I feel so bad, dealing with an illnesses watching your own kid go through it is so hard.

    • @Arampe
      @Arampe 2 ปีที่แล้ว +4

      Praying for you and your daughter. I hope she gets better. Take care of yourself! Sending my love, respect and hope for a better future!

    • @JaysLifee
      @JaysLifee 2 ปีที่แล้ว +2

      @M T Thank you, I really appreciate that 🧡

    • @JaysLifee
      @JaysLifee 2 ปีที่แล้ว +3

      @@Arampe Thank you so much. I really appreciate that. I'm trying but its hard because of her condition to care about anything other then her right now. I'm hoping for a a miracle at this point. Thank you again I appreciate your kind words.

    • @Arampe
      @Arampe 2 ปีที่แล้ว +2

      We will pray for a miracle for your daughter with you. God bless you! 🙏❤

    • @kazzie2935
      @kazzie2935 2 ปีที่แล้ว +2

      🙏

  • @daughterofunicorns3873
    @daughterofunicorns3873 2 ปีที่แล้ว +13

    The first instant I saw all of your family on the sofa I knew your family was full of love and acceptance. The mother's smile is so entirely warming- you have such a beautiful family. Sending your family lots of love xxx

  • @lindaterzich6632
    @lindaterzich6632 2 ปีที่แล้ว +24

    What a blessing for Punya to be in that family!

  • @marinagoldberg7908
    @marinagoldberg7908 2 ปีที่แล้ว +54

    What a beautiful family, so knowledgeable. Thank you for sharing your experiences 🙏❤

  • @wiktoriamucha1712
    @wiktoriamucha1712 2 ปีที่แล้ว +30

    Punya and Ananya are so pretty! What a beautiful and nice family

  • @Kaiden-9226
    @Kaiden-9226 2 ปีที่แล้ว +54

    I hope In the future she will be capable of speaking she’s a nice kid my thoughts and prayers ❤️

  • @bethroesch2156
    @bethroesch2156 2 ปีที่แล้ว +27

    You introduce us to the most beautiful, incredible families and I am so grateful for this channel. Punya is such a beautiful young lady and her family is full of love and respect. It's so frustrating for families who can't get clear answers and find good treatments. I pray they can find answers soon 🙏🏻♥️ these folks are inspiring. Never lose hope ✌🏻

  • @newchapterasmr
    @newchapterasmr 2 ปีที่แล้ว +18

    A gorgeous family. Little Ananya is such a sweet little sister. I hope Punya will be better in the future

  • @kinananana
    @kinananana 2 ปีที่แล้ว +17

    Punya's sister is so smart and intelligent, seeing her cares about her parents and Punya made me feel hopeful

  • @datumzinememories
    @datumzinememories 2 ปีที่แล้ว +55

    Such a very sweet family and seeing the good and understanding.. Also I do understand fully wanting to keep someone safe as you grow older.

  • @Velvet_wings9
    @Velvet_wings9 2 ปีที่แล้ว +11

    Punya’s eyes are so full of life and intelligence. I am sure she has great inner abilities and personality even she can’t express them now. But I see them in her eyes. it will get better! The eyes tells so much!

  • @shellbysmith3479
    @shellbysmith3479 2 ปีที่แล้ว +22

    I wish I could help people like puny as parents to give them some help during the day I am 58 and worked with special needs children while I was working it gives me such pleasure being with the children and the families many blessings to punya and her whole family you have 2 beautiful daughters and I know your hearts are full of love

  • @LunaG123
    @LunaG123 2 ปีที่แล้ว +37

    Such a beautiful family inside and out, and the little sister is such a sweet angel 🥲 thank you for sharing your story❤️

  • @barbararoni1
    @barbararoni1 2 ปีที่แล้ว +26

    This family is just so wonderful!

  • @MrCoryinnocence
    @MrCoryinnocence 2 ปีที่แล้ว +21

    Amazing how Punya is able to communicate without being able to speak. I hope she starts to feel better and you will find the right combination of medications to help with her seizures.

  • @SuperMissblueeyes
    @SuperMissblueeyes 2 ปีที่แล้ว +18

    I'm so glad Punya has a loving family just like she deserves. And Ananya, you're awesome too! Remember to take care of yourself too. I love that you love to take care of Punya, but if you don't take care of yourself, you won't be able to take care of Punya when you want to. And I can see what an amazing sister you are to Punya.

  • @torzewski1972
    @torzewski1972 2 ปีที่แล้ว +10

    Beautiful family! The youngest daughter is such a sweet soul.

  • @ntr3xll160
    @ntr3xll160 2 ปีที่แล้ว +6

    Punya is too adorable. The way she is sitting on her father's lap as if she is sunbathing at the beach, cuteness overload 🖤 I wish the best for her family, and every new day is a blessing from God.

  • @jen4552
    @jen4552 2 ปีที่แล้ว +16

    My daughter has seizures. I completely know what you mean when you said her personality has changed. I know what that means, what is fully encompasses. From one parent of an epilepsy child to another, I understand.
    Hugs.

  • @lynnetimmermann3878
    @lynnetimmermann3878 2 ปีที่แล้ว +5

    What a wonderful, thoughtful father! I love how the whole family takes such good care of her.

  • @paulalancaster1
    @paulalancaster1 2 ปีที่แล้ว +15

    Such a beautiful loving family! Sending prayers for Punya and all of you.

  • @Bambi_Bambule
    @Bambi_Bambule 2 ปีที่แล้ว +4

    Ananya is super cute! She’s already so eloquent, such a smart kid!

  • @bigd4136
    @bigd4136 2 ปีที่แล้ว +13

    Bless this family and bless this comment section. Anytime I need to warm my heart this channel is here to do it. Hopefully the comments stay forever now so these families can see the love that’s in the world when they may need a boost on rough days! To the family, I hope you receive the answers you are searching for to make Punya’s life, and yours, as fulfilling as possible. You all deserve it!!

  • @leighannwagor5037
    @leighannwagor5037 2 ปีที่แล้ว +14

    Oh, my gosh! She is so sweet! Anaya and Punya should have a channel.

  • @zainabalghamdi2403
    @zainabalghamdi2403 2 ปีที่แล้ว +9

    The parents should be proud of their younger daughter for being so supportive of her big sister!! Punya chilling on her dad's lab is so cute!

  • @kayf9643
    @kayf9643 2 ปีที่แล้ว +23

    Sending so much love and many prayers that they will find a solution for helping with the seizures, puyna sister is so incredible

  • @xomosmanifestos4580
    @xomosmanifestos4580 2 ปีที่แล้ว +11

    I wish my family loved me like this when I was growing up. I don’t remember being encouraged once.

    • @sarac.3259
      @sarac.3259 2 ปีที่แล้ว +4

      Oh I feel so sad reading that. I hope you have some good friends and colleagues (co-workers) now who do encourage you. I think we all need encouragement. You can't change your growing-up years but if you can find an opportunity - at some point - to encourage others then it may also help you. I found my first few years at school really hard and - since becoming a parent - I now work part-time in a school, and use my experience to encourage children to be confident and be the best they can be.

  • @jbmaitre5758
    @jbmaitre5758 2 ปีที่แล้ว +5

    After looking at so many SBSK videos I have noticed that often the siblings in the family who do not have an illness or do not have a syndrome are the most loving, caring, and highly intelligent brothers or sisters, no matter how young there are it always amazes me how mature they are at such young ages it truly is beautiful to watch.... ❤ ❤ ❣ ❣ ❤ ❤

  • @msv.4438
    @msv.4438 2 ปีที่แล้ว +15

    I like how bonded this family is ,there is so much love and care! It's obvious that the parents are doing the best they can!!
    Punya's smile is so sweet!

  • @fatzy9500
    @fatzy9500 2 ปีที่แล้ว +7

    I love Punya's hair. This is a great family, and I loved the video!

  • @Alex-ti9lf
    @Alex-ti9lf 2 ปีที่แล้ว +8

    You're making a real appreciable difference in people's lives and there is no more a precious gift avaliable to humanity. I'm a 4th year Occupational Therapy student, I couldn't be happier that people like you exist, no politician can provide the hope that you do meerly by offering a voice and your time. Nobility has long been forsaken by modern times, you are the light in the dark.

  • @nahueldc6793
    @nahueldc6793 2 ปีที่แล้ว +21

    Hi SBSK, love your content! it's good to have creators in youtube that raise awareness about our world!

  • @spac3cad3t
    @spac3cad3t 2 ปีที่แล้ว +5

    This family is such a good example of love and kindness

  • @ghost403
    @ghost403 2 ปีที่แล้ว +7

    What an inspiration: "Never lose hope." Thanks for asking that question, Chris, and thank you to Punya and Ananya's parents for being a positive example to so many!

  • @mothemagicclown
    @mothemagicclown 2 ปีที่แล้ว +7

    I'm so happy that the comments are back on cuz the positivity and love here is so wonderful. This family is so beautiful. Sending them love and hope! Bless them. 💖💖💖

  • @monicdavis6150
    @monicdavis6150 2 ปีที่แล้ว +8

    Punts is chilling on dads lap. Beautiful family, sending much love 🤩😊❤️

  • @padhmajasatyamoorti7688
    @padhmajasatyamoorti7688 2 ปีที่แล้ว +1

    Beautiful family. Adorable little sister. All of you taking about Puniya with a smile needs appreciation. Very commendable display of attitude.
    I assure the parents the girls will be in my prayers everyday. Hope Punya gets healthy and stays happy.

  • @anon_ya
    @anon_ya 2 ปีที่แล้ว +3

    Hands down one of the best channels on TH-cam. Thank you for serving these families and the public by your compassion and telling their stories.

  • @TheNoonie50
    @TheNoonie50 2 ปีที่แล้ว +7

    What great family support Punya has. I hope and pray they find what works to make Punya more comfortable, and her old, active self again. Sending love to this family!

  • @allaboutthatwifeandmomlife
    @allaboutthatwifeandmomlife 2 ปีที่แล้ว +2

    What a lovely family. We have a non-verbal 20 year old and I completely understand when mom said she can’t fully enjoy being out of the home, because of the concern of Punya. We feel the same our son likes his room, our home and we can predict what will happen at home. Going out is SCARY! If he makes too much noise or he’s not happy, or he’s hungry anything can set us up for completely being overwhelmed.

  • @CoolestRedHead
    @CoolestRedHead 2 ปีที่แล้ว +5

    Oh no that little angel made me cry 😢 great sister !!!!

  • @rosalindwilson1888
    @rosalindwilson1888 2 ปีที่แล้ว +4

    The best thing one should remember about this family is that they are an exemplary family,very pro life,as they had the courage to have a second child amidst so much difficulty and reveal the courage and hope that is carrying them and providing the best to both their children. I admire their inner strength and wish and pray that god's healing touch flows into their daughter through their love courage and determination. God bless you all.

  • @ZiggyonMars
    @ZiggyonMars 2 ปีที่แล้ว +3

    This is a wonderful family, the mother is beautiful and you can tell how much she cares for her children

  • @gloriaziwaofficialtv9444
    @gloriaziwaofficialtv9444 2 ปีที่แล้ว +35

    My prayer for everyone reading this comment now that before the end of the year 🙏a new chapter of greatness will be open in your life 🙏🙌✨❤💙

    • @Psalm23.06
      @Psalm23.06 2 ปีที่แล้ว +2

      Amen ❤😇

    • @felipefelipado
      @felipefelipado 2 ปีที่แล้ว +2

      Amen 🙏🏻

    • @beaned1434
      @beaned1434 2 ปีที่แล้ว

      I don't think so

    • @naomihope8278
      @naomihope8278 2 ปีที่แล้ว +2

      Thanks sis 💕💕🥰🥰you toooooooo💓

    • @Taylor-ur7wl
      @Taylor-ur7wl 2 ปีที่แล้ว +2

      Thank you so much

  • @colleenkrizak9125
    @colleenkrizak9125 2 ปีที่แล้ว +30

    My cousin is in her early 20s and also has Phelan-McDermid syndrome!

  • @njoolong
    @njoolong 2 ปีที่แล้ว +4

    A lovely family. How sweet was it when Chris addressed Punya directly and she just lit up 😚❤ and that little sister...wise beyond her years and super cute. Great interview - thanks to Punya's family for sharing their story.

  • @namidakoh1027
    @namidakoh1027 2 ปีที่แล้ว +3

    I adore this family! I can’t get over how amazing mom looks! She can pass for Punya’s older sister! God bless this beautiful, dynamic, and happy family!

  • @makingithome8493
    @makingithome8493 2 ปีที่แล้ว +15

    Wow! This whole family is beautiful!!!

  • @Heatherbot713
    @Heatherbot713 2 ปีที่แล้ว +3

    What a beautiful family. You can really tell the younger sister absolutely adores her big sister so much. The daddy cuddles just melt my heart also!

  • @anitapillai7110
    @anitapillai7110 2 ปีที่แล้ว +4

    Praise the Lord... And his mercy be onto the beautiful family of Punya...

  • @samanthaheeringa8674
    @samanthaheeringa8674 2 ปีที่แล้ว +24

    Such a beautiful family💞

  • @cece9266
    @cece9266 2 ปีที่แล้ว +1

    “I can help her when she’s big and I’m big” god bless these parents and the two beautiful souls they brought into this world ❤️

  • @samm9151
    @samm9151 ปีที่แล้ว +2

    What an absolute beautiful family. They're all so kind and understanding of each others needs. It is so awesome to see such amazing people exist in this world.