top of page

Meet our families - Rayyan

Meet Rayyan, he is 5, 6 this year, Rayyan was diagnosed with Infantile Epilepsy Encephalopathy TBC1D24 at 10 months old.

Rayyan has been registered with us for a number of years, we already had a close connection to the family as we had the pleasure of knowing & supporting his family with his brother Zayn.

Rayyan really enjoys water, sensory play, music, rhyme time, massages & the outdoors.

He loves anything Disney on the TV.

The family attend many of our family events & access wishes whenever they have needed them.

Rayyan’s condition Infantile Epileptic Encephalopathy (EIEE) is a neurological disorder characterized by seizures

EIEE, also called Ohtahara syndrome, is a rare disorder characterized by infantile spasms. It has an early onset and symptoms generally occur before the age of one, with seizures often beginning before the tenth day of life.

EIEE was first identified in 1978. It affects 1 to 1.6 in 100,000 individuals worldwide and is considered a very rare condition. This number includes types of spasms other than those seen in EIEE.

There is currently no cure for EIEE. Patients with EIEE require constant supervision. Treatment for EIEE is not very responsive to antiepileptic drugs.

#EIEE #EmilysStar #Awareness #Rare



4 views0 comments

Recent Posts

See All
bottom of page