Chris is a 6 year old brave young boy from Birmingham, living with a rare, life-limiting, terminal condition that was triggered shortly before his second birthday.

Chris was a happy, energetic toddler who loved exploring the world around him. Just before his second birthday, he caught Chicken Pox — something every parent expects their child to recover from. I had no idea that this ordinary illness would trigger a rare genetic condition that would change our lives forever.

After his birthday, we noticed Chris limping on one leg. The change was so slow that at first we didn’t realise something was wrong. He would ask to be carried more often or sit down during walks in the park. As his symptoms gradually worsened, we took him to A&E, hoping for answers.

Chris was diagnosed with late infantile Krabbe disease, a rare and devastating neurological condition. In December 2021, he underwent an unrelated umbilical cord stem cell transplant. The transplant slowed the progression of the disease — something we are deeply grateful for — but it cannot cure him or restore the abilities he has already lost.

Today, Chris’s condition is stable, and he continues to show incredible strength and determination. However, he needs physiotherapy twice a week to maintain his mobility, reduce pain, and preserve the abilities he still has. Physiotherapy is essential for his quality of life.

As a single parent, I have used all of my savings to support Chris’s treatment. I have reached a point where I can no longer afford the physiotherapy sessions that he urgently needs. Any support will go directly toward funding Chris’s physiotherapy and specialist equipment giving him the best possible chance to keep fighting this disease with the courage he shows every day.

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