At just a few days old it was evident that something was not right with Elijah’s health. He had failed his initial hearing and sight screenings, and early on he started experiencing frequent seizures. Doctors were perplexed as to what could be the cause and Elijah was taken for mitochondrial DNA testing at Alder Hey Children’s Hospital where, at 14 months old he was diagnosed with an incredibly rare neurological illness known as CODAS Syndrome.

Elijah is the UK’s first known case, and the diagnosis came as a bittersweet relief to his parents Kylie and Ian. Kylie told us that “whilst we were happy learn the name of Elijah’s illness after waiting so long for doctors identify what was going on, with the syndrome so rare there are many unknowns, and his prognosis is highly uncertain”.

Despite this, Elijah has so far proved incredibly resilient. Kylie and Ian were told by the clinicians that it was unlikely for Elijah would reach his first birthday and he has just celebrated his second. Nevertheless, Elijah’s illness is debilitating, he cannot sit unsupported and with his drug-resistant epilepsy, he suffers upwards of ten seizures each day. Elijah spent much of his time asleep on the family sofa, which, as his epilepsy is uncontrolled, was a danger to him.

Having used P-Pod seats at his local children’s hospice, Kylie and Ian knew the benefits of the supportive beanbag for Elijah. They spoke with his Occupational Therapist about obtaining one for him to use at home and the correct model was agreed but they quickly found the item was unobtainable through statutory sources. As it also came with a high price tag, they began looking for charitable support with the help of Elijah’s Occupational Therapist and when they came to React, they were immediately impressed with our service.

As Kylie said: “React has been brilliant for us, so quick to respond and the team has been so good with keeping up communication. The P-Pod has made such a difference to family life and Elijah’s care routine. Having him safe in the P-Pod means I spend less time worrying about Elijah and more time focussing on family time and his brothers race to sit in the chair when Elijah comes out of it!”