Thanks for taking the time to visit my JustGiving page.
As some of you are aware our daughter was diagnosed with cystinosis. This is a rare genetic disorder and unfortunately there is no cure, yet!
Cystinosis occurs due to a fault in the cells to remove excess levels of cystine, an amino acid. This can lead to kidney problems, vision difficulties and blindness, major organ problems/failure and growth impairment.
She is prescribed medications around the clock in the attempt to slow the progression and further damage to her other organs. These can leave Ava feeling unwell at times. Eyedrops are administered every 2 hours through the day to prevent further damage to her eyes.
Without this medication things would be pretty bleak, not so long ago it was rare for people to reach adulthood with this disease.
Ava's kidneys have been left severely damaged by this disease meaning that in the future she will require dialysis and inevitably a kidney transplant. At the moment we are able to top her up with the electrolytes and salts that's her kidneys flush out.
Due to this diagnosis Ava has spent a lot of time in hospital these last 6 months in the attempt to stabilise her health. The hospital will always play a big part in ava's life now even post transplant as medication will be for life time.
We hope with your generosity the foundation can continue to research for a cure and support those with cystinosis and their families.
Friends and family completed a12 mile walk on Sunday 26th August 2018. More fundraising events to follow...
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