Thank you for sharing your story. You both are doing such a great job! I can’t imagine going through what you are going to but you keep all mums out there strong 💪🏽 and give them hope that when there is love everything is possible. Blessing to your family 🙏🏽
My son has 22q deletion syndrome and the “symptoms” are almost the exact same. Crazy how much all of these syndromes override. He had interrupted aortic arch, VSD, ASD, bicuspid aortic valve, sub-aortic stenosis, cleft palate, tube fed, low tone, low immune system, etc! I will say he’s now 6 and while the first few years were hard with surgeries etc it’s now calmed down and he’s such a joy and we live a really “normal” life despite therapy etc drs apts etc
My son has 22q. 11.2 deletion Syndrome. He was given less than 12 hours to live. He also has hEDS another rare syndrome. He will be 30 years old in May. He had 12 years of intense therapy and it really helped. Now he is happy and basically healthy and doing well. He even drives. Good luck on your journey with your child.
She is beautiful and lucky she has you to guild her through life. And your husband is right it does not affect your how manley you are having a special needs child i worked in a special needs school and their was a lot of single mothers as the fathers just could not cope with the childs diagnosexxx
My daughter also have Kabuki syndrome, she is 11 and has been quite the journey! Kabuki is what my daughter has, and doesn’t define her. It also made her the kindest most loving soul you can imagine! You are awesome parents! ❤
You’re such a gem! Already sharing your tips and journey for anyone else who has to go through this. You’re clearing the path ahead… I wish all of you well and that our little Kabuki Girl will continue to grow up in a happy and healthy environment. ❤️
You both & your beautiful daughter are soo special, mature, loving, just plain brilliant! Thank you so much for enlightening us on your story! I love your strength! Love your humor too ♥️🙏🏼🤗🌹🌟💐🎈
This was wonderful and very strong of you both🤗 Praying for your family and beautiful BB. I’m happy she has loving and resilient parents. Respect and love❤️ May God continue to protect and give you strength always🙏🏽 We love you BB!
IMPRESSIVE-you both are amazing! You have brought attention to many of us going thru hard times. Not as difficult as you, but forgive, love and get help. I pray for your ease of anguish and of course for your little BB. Thank you for your time and explaining your journey. I wish I could help but know that you are in my prayers.
Wow, I'm so impressed with both of you. You're so intelligent and well-spoken and such amazing parents. When this little angel chose parents, she chose the best. She is so blessed to have both of you. What a team. I have a rare genetic syndrome, but I had an alcoholic, mentally ill single mother She refused to believe I was in pain. At 60 years old, after going from one dr to another since I was 19, I was finally diagnosed. But by that time I had 5 kids, and 5 grandkids. They all inherited it. And the last of my kids inherited another rare genetic syndrome as well. So it was extremely hard to diagnose him, as the problems from both illnesses combined confused the Dr's. Finally , as he is close to 30 years old, and we realize what he has. But it took me years of studying medical info to figure it out all on my own and convince the Dr's to test us. I'm bedridden now, in unbearable pain, even on strong meds. But it makes me so happy to see a disabled child having parents like you to support her and love her. Something that I never got. She's beautiful. Take good care of her . Sending love from NY USA
Oh Ann, what an incredible journey you have had and still have. I'm so truly sorry about your late diagnosis, and the fact that you didn't receive all the support and love that you deserved from day 1 is not fair! It's so inspiring that you worked to hard to find answers yourself, that says a lot about your resilience and courage. I hope that Beatrice's story can alleviate a little bit your pain, I'll make sure to post many funny and lovely updates! Big hugs to you 🫂
Your both so brave, your journey has just begun, don't feel bad if the coping vail slips. Your daughter is a special girl with the best parents she could have and so much love, it will be the love that gets you all through this. I was told my son wouldn't talk walk have learning disabilitys along with a spectrum of things to look out for. In sept he left uni with a 1st degree in politics and economics. Not sure how he will use them lol but just goes to show with the right support and the right person fighting your child's corner miracles can happen.
Hey , my son was born with a cleft palate, he’s 41 years old now,,, he has done well no speech impediment could always drink . Most children born with a cliff palette, and Cliff clip are usually highly intelligent.. I have pics and if you need to talk, send me messages. This has nothing to do with anything you did.
Don’t know why you would feel ashamed of telling your family & friends that you are having a disabled child🤔. Every child is a blessing, especially a disabled child ; they are such an inspiration🙌🏻. Parents who accept the challenge of raising a child with a disability are heroes! Our society doesn’t value every life; although each life has value and should receive every opportunity to live that life to the fullest! You are right in saying LOVE is the WAY❤️. Your daughter will thrive if you love her👍Please don’t listen to what the doctors say🙄 of course they know much, but they are looking at things from a clinical viewpoint. They don’t know everything! Treat your child as you would treat any child ; with the proper expectations due to her disability, providing her stimulation, encouragement, discipline (when appropriate) with patience and consistency and you will be rewarded with so many joys and she will teach you what is truly important in life! May God bless your family🙌🏻🕊️🙏🏻❤️
Thank you so much for your kind words, Danielle!❤️ Receiving a diagnosis of a syndrome is never easy and there are many emotions that can be experienced and that are completely valid. One of them is feeling ashamed. I believe they are valid, but it doesn't mean they are rational. That's why it's important to talk about each one's experience with sincerity and kindness. Or at least, that's how I lived and still live our journey! 😊
I’m curious where this couple lives. If it was America, they’d lose everything and their insurance would be denying everything. Good health care is only for rich people in the U.S.
Hey , my son was born with a cleft palate, he’s 41 years old now,,, he has done well no speech impediment could always drink . Most children born with a cliff palette, and Cliff clip are usually highly intelligent.. I have pics and if you need to talk, send me messages. This has nothing to do with anything you did.
Thank you for sharing your story. You both are doing such a great job! I can’t imagine going through what you are going to but you keep all mums out there strong 💪🏽 and give them hope that when there is love everything is possible. Blessing to your family 🙏🏽
Thank you so much!
My son has 22q deletion syndrome and the “symptoms” are almost the exact same. Crazy how much all of these syndromes override. He had interrupted aortic arch, VSD, ASD, bicuspid aortic valve, sub-aortic stenosis, cleft palate, tube fed, low tone, low immune system, etc! I will say he’s now 6 and while the first few years were hard with surgeries etc it’s now calmed down and he’s such a joy and we live a really “normal” life despite therapy etc drs apts etc
What a journey it must have been for you all, Jamie! I'm glad he's now thriving! ☺️☺️
My son has 22q. 11.2 deletion Syndrome. He was given less than 12 hours to live. He also has hEDS another rare syndrome. He will be 30 years old in May. He had 12 years of intense therapy and it really helped. Now he is happy and basically healthy and doing well. He even drives. Good luck on your journey with your child.
Your sweet little girl is lucky to have you as her parents. She chose well.🥰
Beautiful
She is beautiful and lucky she has you to guild her through life. And your husband is right it does not affect your how manley you are having a special needs child i worked in a special needs school and their was a lot of single mothers as the fathers just could not cope with the childs diagnosexxx
Yes, it's quite overwhelming to receive these diagnosis. In these situations we need all the support we can get, right? ☺️
My daughter also have Kabuki syndrome, she is 11 and has been quite the journey! Kabuki is what my daughter has, and doesn’t define her. It also made her the kindest most loving soul you can imagine! You are awesome parents! ❤
Thank you so much Victoria! You are right, it does not define our kiddos! 💪💚
I wish i had been as smart and as strong as you when i first started out with my children. You're just amazing.
You are an amazing mother and woman. Your husband is an amazing father
She is adorable!
You’re such a gem! Already sharing your tips and journey for anyone else who has to go through this. You’re clearing the path ahead… I wish all of you well and that our little Kabuki Girl will continue to grow up in a happy and healthy environment. ❤️
She’s so CUTE and look at her Beautiful hair ❤❤❤
Her hair is the best! 😍
You & Your Husband are so very brave in Sharing and I Applaud you both ❤️ You both are so strong in Mind & Soul!!! Love it 🥰
Thank you so much!!
You both & your beautiful daughter are soo special, mature, loving, just plain brilliant! Thank you so much for enlightening us on your story! I love your strength! Love your humor too ♥️🙏🏼🤗🌹🌟💐🎈
Thank you so much for your kind words Anne! 🥰❤️
This was wonderful and very strong of you both🤗 Praying for your family and beautiful BB. I’m happy she has loving and resilient parents. Respect and love❤️ May God continue to protect and give you strength always🙏🏽 We love you BB!
You are an honest and loving couple. Your daughter is beautiful and loved. 🙏💕💝
I appreciate it, thank you!!
IMPRESSIVE-you both are amazing! You have brought attention to many of us going thru hard times. Not as difficult as you, but forgive, love and get help. I pray for your ease of anguish and of course for your little BB. Thank you for your time and explaining your journey. I wish I could help but know that you are in my prayers.
Such a beautiful little girl. ❤
Thank you 🙏
Just watched the first few minutes, I’m a retired Midwife and NNICU RN. Your baby girl had pretty well the whole book thrown at her.
She has had a tough start at life for sure!
Beautiful family. Thanks for sharing
Thank you 😍
Wow, I'm so impressed with both of you. You're so intelligent and well-spoken and such amazing parents. When this little angel chose parents, she chose the best. She is so blessed to have both of you. What a team. I have a rare genetic syndrome, but I had an alcoholic, mentally ill single mother
She refused to believe I was in pain. At 60 years old, after going from one dr to another since I was 19, I was finally diagnosed. But by that time I had 5 kids, and 5 grandkids. They all inherited it. And the last of my kids inherited another rare genetic syndrome as well. So it was extremely hard to diagnose him, as the problems from both illnesses combined confused the Dr's. Finally , as he is close to 30 years old, and we realize what he has. But it took me years of studying medical info to figure it out all on my own and convince the Dr's to test us. I'm bedridden now, in unbearable pain, even on strong meds. But it makes me so happy to see a disabled child having parents like you to support her and love her. Something that I never got. She's beautiful. Take good care of her . Sending love from NY USA
Oh Ann, what an incredible journey you have had and still have.
I'm so truly sorry about your late diagnosis, and the fact that you didn't receive all the support and love that you deserved from day 1 is not fair!
It's so inspiring that you worked to hard to find answers yourself, that says a lot about your resilience and courage.
I hope that Beatrice's story can alleviate a little bit your pain, I'll make sure to post many funny and lovely updates!
Big hugs to you 🫂
Your both so brave, your journey has just begun, don't feel bad if the coping vail slips. Your daughter is a special girl with the best parents she could have and so much love, it will be the love that gets you all through this. I was told my son wouldn't talk walk have learning disabilitys along with a spectrum of things to look out for. In sept he left uni with a 1st degree in politics and economics. Not sure how he will use them lol but just goes to show with the right support and the right person fighting your child's corner miracles can happen.
My son’s best friend, has the same syndrome. She’s a wee doll. And will be 12 in December.
Aww, happy birthday to her!
I came from tiktok you are good parents really, i wish that your girl gets better
Hey , my son was born with a cleft palate, he’s 41 years old now,,, he has done well no speech impediment could always drink . Most children born with a cliff palette, and Cliff clip are usually highly intelligent.. I have pics and if you need to talk, send me messages. This has nothing to do with anything you did.
Thank you for your kind words, Linda! 🙏
❤my prayers and love go out to you. YOU are great parents.
Thank you so much Gayle 🥰
Yo seem like a really lovely family ❤❤❤❤❤❤❤❤
We try our best 🥰
Is she okay I searched your account on tiktok I couldn’t find you!?
www.tiktok.com/@mykabukigirl Have you tried this? Let me know!
@@MyKabukiGirl
Don’t know why you would feel ashamed of telling your family & friends that you are having a disabled child🤔. Every child is a blessing, especially a disabled child ; they are such an inspiration🙌🏻. Parents who accept the challenge of raising a child with a disability are heroes! Our society doesn’t value every life; although each life has value and should receive every opportunity to live that life to the fullest! You are right in saying LOVE is the WAY❤️. Your daughter will thrive if you love her👍Please don’t listen to what the doctors say🙄 of course they know much, but they are looking at things from a clinical viewpoint. They don’t know everything! Treat your child as you would treat any child ; with the proper expectations due to her disability, providing her stimulation, encouragement, discipline (when appropriate) with patience and consistency and you will be rewarded with so many joys and she will teach you what is truly important in life! May God bless your family🙌🏻🕊️🙏🏻❤️
Thank you so much for your kind words, Danielle!❤️
Receiving a diagnosis of a syndrome is never easy and there are many emotions that can be experienced and that are completely valid. One of them is feeling ashamed.
I believe they are valid, but it doesn't mean they are rational. That's why it's important to talk about each one's experience with sincerity and kindness.
Or at least, that's how I lived and still live our journey!
😊
Beautiful girl🥰
Thank you!! 🙏
My son has trysomy 9p and it's been quite a journey.
I imagine what a roller coaster it's been for you...
I have cp.
Oh Sally, how are you feeling?
It seems so unfair for precious little babies to be born with a problem,,
I know...😢
2020
?
Kabuki syndrome
Yes! ☺️
Do you know this syndrome?
I’m curious where this couple lives. If it was America, they’d lose everything and their insurance would be denying everything. Good health care is only for rich people in the U.S.
Yeah, we're so grateful that we live in Australia. We have opportunities and support that too many people in other countries don't have!
That's not true at all. Everyone in America has access to quality health care.
Hey , my son was born with a cleft palate, he’s 41 years old now,,, he has done well no speech impediment could always drink . Most children born with a cliff palette, and Cliff clip are usually highly intelligent.. I have pics and if you need to talk, send me messages. This has nothing to do with anything you did.
Thank you so much Linda! It's great to hear that your son has been doing so good, that will inspire many of us!