LIFE OF RILEY

Glad we could help this little boy please guys take 5 and read story below xx 

The Life of Riley

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 diseaseThis 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 hamartomaAnother 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 NerveT

he 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.TreatmentDue 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 3 or 4 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 has just had the operation on the right side of the brain and in about April he will return to Leeds General infirmary for the operation on the left side.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 if needed would have to take place overseas (probably USA).

The Life of Riley FundRiley’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. 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 possibly need funds to get treatment abroad for the Hypothalamic Hamartoma that has become his primary focus.The intention is to set up a trust for all money raised and , if for any reason, it becomes impossible or unnecessary for Riley to go overseas for surgery, all funds raised will go to Other charities that have helped such as Sick Children’s Trust (Eckersley house) ward 52 Leeds General Infirmary, and continued support to children and their families with rare conditions in East Yorkshire.