Welcome to The Life of Riley Appeal
Raising awareness and providing support for sufferers of Moyamoya disease and Hypothalamic hamartoma.
About the charity
Back in April 2017, just after his 5th Birthday, little Riley Watkins was having his bath when he got upset and couldn’t speak. His parents lifted him out and his legs gave way, he couldn’t lift his arms and his face drooped. They rushed him to hospital where he recovered and they could not find anything wrong. This happened again in June and again after that and he was sent for lots of tests.
At first it was thought that Riley was suffering from epilepsy but in September they were told that he was suffering from three separate conditions.
Moyamoya disease - This is a very rare condition affecting 1 in 1,000,000 people. Essentially it is a narrowing of the blood vessels supplying the brain and the episodes which Riley had been suffering were TIAs or mini strokes. Failure to treat would lead to a full blown stroke.
Hypothalamic hamartoma - Another rare condition which only affects 1 in 200,000. This is a benign tumour in his brain which was initially diagnosed as stable. However, Riley has since suffered uncontrolled giggling fits lasting up to ten minutes (gelastic seizures) and other symptoms can follow. This can be a progressively disabling condition.
Optic Nerve - The doctors also discovered a thickening of the optic nerve. Riley has been seen by an eye specialist and while there is no immediate problem with his sight, he will continue to be monitored.
Treatment - Due to the severity of Riley’s Moyamoya urgent surgery was called for. This involves taking the main blood vessel supplying the skin (found near the temple) and placing it directly onto the brain. After 5 or 6 months the brain should start to grow new vessels which will become the main pathway for blood to the brain. The blocked arteries cannot be repaired.
Riley had the operation on the right side of the brain in January lasting 6 hours and he returned to Leeds General infirmary on the 10th April for the operation on the left side lasting 9 and half hours. Even if surgery is successful, Riley will remain at increased risk of stroke for the rest of his life.
Riley may need surgery for his hypothalamic hamartoma. This is not yet certain but, as things stand, this surgery is not available on NHS and would have to take place overseas (probably USA).
The Life of Riley Fund - Riley’s father, Chris, had always intended to fund raise primarily to raise money for those organisations who have given the family such fantastic support through these incredibly stressful months namely the Sick Children’s Trust and Ward 52 at Leeds General Infirmary. He is keen not only to raise money but also raise awareness of these rare conditions. However, as it has become apparent that they may need funds to get treatment abroad that has become his primary focus.
To that end we are establishing the Life of Riley Appeal Ltd. The primary purpose will be to fund Riley’s treatment and to raise awareness of Moyamoya and Hypothalmic Hamartoma. If for any reason Riley’s treatment proves impossible or unnecessary or excess funds are raised, monies will go towards research into these conditions and to charities which assist children who suffer from rare and similar conditions and which support their families and will be an ongoing charity after Riley’s needs are met.
“Moyamoya disease and hypothalamic hamartoma are rare diseases, affecting one in 1,000,000 and one in 200,000 people.”
about Moyamoya disease
Moyamoya disease is a rare blood vessel (vascular) disorder in which the carotid artery in the skull becomes blocked or narrowed, reducing blood flow to your brain. Tiny blood vessels then open up at the base of the brain in an attempt to supply the brain with blood.
about Hypothalamic hamartoma
A hypothalamic hamartoma (HH) is a rare, benign (noncancerous) brain tumor or lesion of the hypothalamus. The hypothalamus is located at the base of the brain and regulates many of the “automatic” functions of the brain, including hunger, thirst, temperature, passion, and hormone regulation. It’s also involved in hormone balance.
Help us raise much needed funds
Can you help by donating, sponsoring or in any other way? Please fill out the form below to let us know and we'll get back to you.