What an inspirational kid! Not because of her disability, but because of her ability and interest in raising funds for hospitals. She could grow up and be quite wealthy having this skill!!
Myself and my son both have Larsen. While my symptoms are mild my son is much more extreme due to his genetics mutating differently with this syndrome. The doctors did not have any idea what was wrong when he was born and it took years of fighting doctors to find his diagnosis which led to mine. I didn’t find out I had Larsen until I was almost 30. I do appreciate what you are doing. Rare disorders and diseases need to be studied much more. Thank you for being brave and speaking out to raise awareness about rare disorders. God bless you.
I am a mother of 4 and my youngest daughter Sedaya is 13 year old she also has Larsens syndrome. She has a trach she also had spinal fusion she is in a wheelchair too. She has lived in a special needs hospital her entire life she has never been home. She will be finally coming home to live with us in a couple of months. You are very a inspirational young lady. And I cant wait to show your story to her❤
Makenna You are a beautiful young Spirit with a Heart Of Gold! Giving back so others can live a better life makes you a Super Hero! Just one thing.... in your next video... please wear a CMNH $5 Donation Wristband so others will see it and want one too! Thanks. Big John
What an inspirational kid! Not because of her disability, but because of her ability and interest in raising funds for hospitals. She could grow up and be quite wealthy having this skill!!
Myself and my son both have Larsen. While my symptoms are mild my son is much more extreme due to his genetics mutating differently with this syndrome. The doctors did not have any idea what was wrong when he was born and it took years of fighting doctors to find his diagnosis which led to mine. I didn’t find out I had Larsen until I was almost 30. I do appreciate what you are doing. Rare disorders and diseases need to be studied much more. Thank you for being brave and speaking out to raise awareness about rare disorders. God bless you.
Same with me Only found out after my daughters diagnosis I’m 62 yrs old now
I am a mother of 4 and my youngest daughter Sedaya is 13 year old she also has Larsens syndrome. She has a trach she also had spinal fusion she is in a wheelchair too. She has lived in a special needs hospital her entire life she has never been home. She will be finally coming home to live with us in a couple of months. You are very a inspirational young lady. And I cant wait to show your story to her❤
My Daughter Kyndal has Larsens Syndrome as well...seeing this video gives us motivation💪🏾
Makenna You are a beautiful young Spirit with a Heart Of Gold!
Giving back so others can live a better life makes you a Super Hero!
Just one thing.... in your next video... please wear a CMNH $5 Donation Wristband so others will see it and want one too!
Thanks. Big John
I had a spica cast too but I got around on a stretcher chair It’s a stretcher with wheelchair front wheels.
My son also have the same case. He is 4 years old now. But we dont have the means for his treatment, can some body help us. Thank you very much
My brother has that another one of the only few
His legs were messed up