Both my beautiful children have this. I wish everyone, and especially the school faculty, and students would understand here in America. My daughter has to struggle with fitting in, not being able to participate in sports or PE. It’s heartbreaking that even grown adults that are suppose to be teachers/role models, have been heard by my daughter over talking with other teachers, that they believe nothing was wrong with her bc she looked just fine. Or that she drew her very real scars on with markers.(Yes..this was the adults and not the children) It has been such a struggle with the school even with specialist documentation. They both are very self conscious of their stature as well. They have turned out to be very strong and intelligent children. I worry with every new surgery they have and every in between. I refused to start them on pain medications at an early age, now teenage years,however we can’t get some to treat the pain appropriately when needed. My oldest has chose to go the natural route with cannabinoids.She finds tremendous relief with it. As a single mother it is a daily struggle to watch your children endure such a disease and pain. It is chronic which means they will always have it. As with disease comes depression. Praying for more medical advances to allow my children to live their best life as comfortable and normal as they can. I hope all is well with you. Stay strong and I appreciate your voice.❤️😊👏🏼👏🏼
Hi I’m Anthony (the guy in the video) I’m using my normal TH-cam account to respond as I don’t have the password for this one since we don’t post vids anymore. I read through your comment on our video and I got the same feelings I got when my Mam (Welsh way to say mother) told me how she felt each time I went in for surgery, it can be tough to live with HME but it seems form my perspective at least, tougher to watch someone you love live with it. It sounds like you do all you can for your children and have stood strong at their sides, your a great Mam and a good person.
Hey I'm 15 and have the same condition, I don't have it as bad as most people but I have a really bad lump on my lower right leg which makes me have one calf bigger than the other... It sucks, and good luck in your operation !!
Im 14 amd have this too . Mine isnt too bad i got a big noticable lump on my right leg it doesn't hurt in day to day activities but i hate keeping it exposed so i prefer to wear full pants
Both my beautiful children have this. I wish everyone, and especially the school faculty, and students would understand here in America. My daughter has to struggle with fitting in, not being able to participate in sports or PE. It’s heartbreaking that even grown adults that are suppose to be teachers/role models, have been heard by my daughter over talking with other teachers, that they believe nothing was wrong with her bc she looked just fine. Or that she drew her very real scars on with markers.(Yes..this was the adults and not the children) It has been such a struggle with the school even with specialist documentation. They both are very self conscious of their stature as well. They have turned out to be very strong and intelligent children. I worry with every new surgery they have and every in between. I refused to start them on pain medications at an early age, now teenage years,however we can’t get some to treat the pain appropriately when needed. My oldest has chose to go the natural route with cannabinoids.She finds tremendous relief with it. As a single mother it is a daily struggle to watch your children endure such a disease and pain. It is chronic which means they will always have it. As with disease comes depression. Praying for more medical advances to allow my children to live their best life as comfortable and normal as they can. I hope all is well with you. Stay strong and I appreciate your voice.❤️😊👏🏼👏🏼
Hi I’m Anthony (the guy in the video) I’m using my normal TH-cam account to respond as I don’t have the password for this one since we don’t post vids anymore. I read through your comment on our video and I got the same feelings I got when my Mam (Welsh way to say mother) told me how she felt each time I went in for surgery, it can be tough to live with HME but it seems form my perspective at least, tougher to watch someone you love live with it. It sounds like you do all you can for your children and have stood strong at their sides, your a great Mam and a good person.
@@pontin2112I appreciate your kind words. It is a bit of encouragement 😊 Thank you. I hope you are doing well my friend!🙏🏼
Thanks for up loading this video. My 4 yo son has just been diagnosed this this condition.
Hey I'm 15 and have the same condition, I don't have it as bad as most people but I have a really bad lump on my lower right leg which makes me have one calf bigger than the other... It sucks, and good luck in your operation !!
+Seb dewhurst Hey thanks for your comment it really means a lot.
Hey I am 18 years old and I have the condition
Im 14 amd have this too . Mine isnt too bad i got a big noticable lump on my right leg it doesn't hurt in day to day activities but i hate keeping it exposed so i prefer to wear full pants