Meet Josie Rae

Josie requires complete rehabilitation in order for her to gain skills such as sitting, standing and walking. Specialist equipment will also help her have more independence and quality of life.

Joise is aged 2 from Ballymena.

Our beautiful blue eyed baby girl Josie Rae is a jet setter, through no choice of her own. This is simply because in Northern Ireland where Josie was born, children like Josie are having to travel the world over to find therapy and treatment for neurological conditions like hers.

Josie has CDKL5 which is a rare genetic mutation that happens 1:40,000. She is unable as yet to do anything for herself and requires constant support. Due to her rare condition Josie requires daily and weekly rehabilitation therapy for her to be able to gain the independence she so deserves and with the correct support and therapy is able to achieve. The problem is that in Northern Ireland our system offers very little rehab or support to families like ours.

Thankfully there are therapists who are willing to travel to countries like the UK & Ireland to help bring relevant treatment and therapy to children like Josie. Kali Jacob’s OT & Simona DeMarchi are two of those professionals. We are hoping to participate in their intensive sessions soon. Josie has already participated in one of their previous intensives and we saw just how much progress Josie gained from that. We are confident she will continue to progress with continued therapy like this.

Thank you

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