Help getting to appointments through Family Fund Mobility Support
Two year old Theo lives in Lincolnshire with his mum Kayleigh, and his grandma Sharon. Theo has been diagnosed with Ohtahara syndrome, which causes uncontrollable epilepsy.
Kayleigh explains “It’s really hard to control so he has seizures on a daily basis. It’s also caused brittle bones disease. He started having seizures when he was three days old. We spent 12 weeks in hospital and during that time we got the diagnosis of his condition. When he was first born he would have 50 to 60 seizures a day but with medication and diet, we’ve got it down to two seizures on a good day.
“Theo is nonverbal. He has started to make noises and you can see through expressions and body language how he’s feeling, so you learn to understand him. Theo has begun to use switches to communicate. Hopefully later down the line we can extend it so he can use more communication aids.”
Mobility Support programme help
Theo’s family was granted a lease to a Ford Galaxy through the Family Fund Mobility Support, a car-lease programme provided by Family Fund and The Motability Foundation.
“It has been a lifeline; to go to hospital appointments, days out and to have enough room in the car for all of Theo’s medical equipment.”
“It’s been a godsend and we are so grateful. They have taken the pressure off having to worry about funding a car that is suitable for Theo. There is so much financial burden that comes with having a child that is medically complex, it takes a toll on you.
“It means I can take Theo out with me. We have to bring his feeding pump, oxygen, suction machine, SATs machine and wheelchair, as well as all of his medication that he needs. It’s also beneficial to know that Theo has enough room in the back in case he has a seizure. It’s reassuring to know that he can’t hurt or damage himself in anyway.
“I can’t put into words how grateful we are for taking that financial burden away.”
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