Stay strong everyone. Don't lose hope. I come from a very poor family. Our child was born with Alagille syndrome. He was labeled failure to thrive/end stage liver disease by one year old. The itching, calcium deposits all were super bad and he was green which made people really cruel. "LOOK! THERES THE HULK!" people wouldn't let their kids play with him like they would "catch" Alagille Syndrome. Our child had multiple open heart surgeries, a liver transplant/spleen removal. He is now 12 years old and doing well.
My 14 months old baby has this disease. I almost cry every night. I’m afraid, I lost hope when he scratch himself and couldn’t stop due to severe itching. You are wonderful Kira, you are strong. I wish i could hug you.
Such a beautiful girl inside and out. We are so fortunate to know Kira, since she was a little girl and to know her parents and Sophie. Our kids had so much fun growing up with the two of them. My how time flies. There isn't a nicer family in the world and we continue to pray for the continued happiness and success for Kira and with her treatment and progress. Hoping for continued breakthroughts due to advanced computers, software, AI, etc. but I know they need continued support to find a cure as the doctor commented. Sending love to Kira and the O'Shea's from the Gould's.
To have gone through so much and to still have have such an amazing attitude is awe-inspiring and a role mode for other young people that you can persevere and get through anything. Thank you to Kira's family for sharing her story (and to her sister for her beautiful voice!). Sending love, light, and hope for continued improvements for Kira and for medical breakthroughs for this condition..
Lana, what a powerful video! Thank you for sharing your family’s journey with Kira’s medical condition. I know it will bring comfort and awareness for others. Kira is an amazing beautiful young lady ❤
What an amazing young girl. Love her positive and happy attitude. She is so fortunate to have such a supportive and loving family. May your future be bright! Great story, thank you for sharing ❤️🌟
Hi Kiara. Just watched video, very interesting and encouraging. It also helps to stay Positive. SENDING YOU LOVE AND BEST WISHES. STEPHEN SNR O DRISCOLL XXXXX
Stay strong everyone. Don't lose hope. I come from a very poor family. Our child was born with Alagille syndrome. He was labeled failure to thrive/end stage liver disease by one year old. The itching, calcium deposits all were super bad and he was green which made people really cruel. "LOOK! THERES THE HULK!" people wouldn't let their kids play with him like they would "catch" Alagille Syndrome. Our child had multiple open heart surgeries, a liver transplant/spleen removal. He is now 12 years old and doing well.
My 14 months old baby has this disease. I almost cry every night. I’m afraid, I lost hope when he scratch himself and couldn’t stop due to severe itching. You are wonderful Kira, you are strong. I wish i could hug you.
Hang in there Momma. Don't lose hope
A young woman of great courage.
Great parents, great sister, great kid
Kira is wise beyond her years. What a lovely, strong young woman.
Such a beautiful girl inside and out. We are so fortunate to know Kira, since she was a little girl and to know her parents and Sophie. Our kids had so much fun growing up with the two of them. My how time flies. There isn't a nicer family in the world and we continue to pray for the continued happiness and success for Kira and with her treatment and progress. Hoping for continued breakthroughts due to advanced computers, software, AI, etc. but I know they need continued support to find a cure as the doctor commented. Sending love to Kira and the O'Shea's from the Gould's.
Lovely comment ❤
U seem to also be a wonderful person.
Much love from Kentucky Lesley and medical service dog Jake.
Brave little girl. I wish her the best.
May Kira have a blessed, disease free life - she's so precious 💖
Sophie's voice is beautiful!
Just a beautiful young woman. She is so lovely,
Like she just stepped out of an old Dutch Painting ❤
What a lovely family!
What a strong little girl and awesome family ❤
To have gone through so much and to still have have such an amazing attitude is awe-inspiring and a role mode for other young people that you can persevere and get through anything. Thank you to Kira's family for sharing her story (and to her sister for her beautiful voice!). Sending love, light, and hope for continued improvements for Kira and for medical breakthroughs for this condition..
Beautiful family ❤❤❤🙏
Lana, what a powerful video! Thank you for sharing your family’s journey with Kira’s medical condition. I know it will bring comfort and awareness for others. Kira is an amazing beautiful young lady ❤
My nephew has this, he's 3 1/2. He's doing ok.
God bless you all Sophie sings very nice keep practicing.
What an amazing young girl. Love her positive and happy attitude. She is so fortunate to have such a supportive and loving family. May your future be bright! Great story, thank you for sharing ❤️🌟
I wish all the best for this nice family
is there a foundation or something collecting donations for research?
I wish them all the very best ❤❤❤
Alagile syndrome : neonatal cholestasis
Triangular facies
Butterfly like vertebra
Pulmonary stenosis
These are clasical finding of this disease
She's so lucky she has rich and intelligent parents. Other kids with this ailment dont have a chance 😢
Yeah boy, she's so lucky. 🤔
This is not a lucky condition. This beautiful child suffers.
No one meant the child was “lucky.” It meant fortunately the parents have good resources for care. Get your head out of your patoot.
Wonderful people
Hi Kiara. Just watched video, very interesting and encouraging. It also helps to stay Positive. SENDING YOU LOVE AND BEST WISHES. STEPHEN SNR O DRISCOLL XXXXX
I was born without a gallbladder
Dad is defo irish
What a lovely family. I’m sorry they’re struggling with such a complicated disease