Noah the Brave

Noah Dixey turns 9 on 25th October 2021.

 

He was diagnosed with a very rare genetic disease- alagille syndrome when he was just 8 weeks old, which affects 1:100,000 children. He has been in and out of hospital and is on over 15 different medications multiple times a day.

 

This condition predominantly affects the liver, but Noah’s conditioning also implicates his heart, he has stenosis-narrowing of blood vessels, an aneurism on his brain, and he has lost his right Kidney.

 

Unfortunately Noah’s remaining left kidney has been struggling too, this has many side effects on his body, one being very high blood pressure, which medications are no longer able to help control.

In August Noah was admitted into Great ormond street hospital for surgery to balloon the artery to the left kidney to allow blood to flow better and improve kidney function- the surgery wasn’t successful, with the artery so narrow they were unable to even get the balloon in. The surgeons also discovered a stent remaining from previous surgeries before he lost his right kidney, has moved and is partially blocking his aorta.

On 26th October, one day after his 9th birthday- Noah is back in GOSH, to undergo his biggest operation yet, a 14 hour long open surgery to remove the stent causing a blockage, and attach his left kidney to another source of blood flow on his lower bowl.

 

Noah, and his family have always faced into every challenge with such bravery, Noah is funny and affectionate and a joy to be around, there is no cure for Noah’s illness and there will be more surgeries and medications in the future.

 

Scott and Gemma do a lot to raise money for charities but never ask for anything for them as a family, so as their family and friends, we wanted to create this page to help raise some money to support Scott and Gemma in the costs of travelling and staying in London when Noah is in GOSH, treats for Noah, and to do some fun things as a family together with Fin and Maisie and keep making memories .

 

Thank you for taking the time to read about Noah, he is brave, He is a fighter, he is a warrior.

 

❤️