Neil is fighting Susac Syndrome, and his young family needs your support. Your donation will directly help to cover vital 24- hour residential care and ongoing medical expenses, bringing him closer to recovery. Please join us in supporting Neil's family and giving him the best possible chance to recover.

As many of you already know, Neil Callaghan, our son and big brother to Jessica and Eoin, has been extremely ill for the past 10 months. In February, Neil started to experience severe headaches and numbness in his arms and legs. Things came to a head at the start of March, just after his son Aidan’s 4th birthday. Neil was admitted to hospital and after a very uncertain few months, Neil was diagnosed with Susac Syndrome, a very rare autoimmune disorder that attacks the brain, eyes and ears.

Up to this Neil was a very healthy fit young man, running, cycling and enjoying raising his 2 very young children, Aidan and Faye. This time last year we were all looking forward to Neil, his wife Naomi and the two children coming to Ireland for the Christmas celebrations. Little did we know what lay ahead and how ill Neil would become.

Initially Neil spent 3 weeks in hospital last March and with great relief was finally discharged and returned home to his family to begin his recovery. But unfortunately in May he had a very severe relapse and ended up back in hospital. This time he spent 4 long months in hospital, more ill than ever, battling an even more aggressive Susac episode. The doctors who were looking after Neil had not previously seen such complex complications. He was unable to speak, swallow, eat or walk. He spent 3 weeks in ICU with severe inflammation and fluid on the brain. Neil has had multiple micro strokes, which have left an incredible amount of damage on his brain, resulting in both physical and cognitive difficulties and leaving Neil full time in a wheelchair. He recently spent two short weeks in a rehab facility, where he showed great strength, (stubbornness!) and determination, something which is key to his recovery.

Neil is currently in a nursing facility as he requires 24 hour care. This is not covered by the insurance policy and the cost ($10,000 per month) is being paid from Neil and Naomi’s savings. This is not a sustainable situation and so we are asking for your help to ensure Neil is provided with the care he needs. Neil has been making very slow but steady progress lately. He has regained some control over his body, building on his core strength, the ability to stand and walk a short distance with assistance. He is speaking a little now and can swallow and eat normal food and liquid with supervision. Neil's prognosis is quite positive. In six months, we are hoping that Neil will be able to transition back to his home environment, where he would still need a lot of intense therapy to ensure a continuation of his progress. This would be a massive undertaking and again your donation could help make this a possibility. Susac is a very complex disease and with severe brain injuries like Neil’s, recovery can go on for years. Right now, we are looking for help to keep Neil on the right track for the next year which will be vital for Neil’s overall outcome. Neil is motivated to keep improving and says, “it’s not about him it’s about his people.”

Neil is a wonderful Dad, he loves nothing more than spending time with his two beautiful children and one of his biggest goals is to be able to get back playing a full part in Aidan and Faye’s lives. We want to highlight Naomi’s amazing dedication and strength throughout this unimaginable nightmare and we want to allow her to focus solely on Neil and the children and not be burdened by financial worries/stress and insurance difficulties and uncertainties.

We would be very grateful for any donation you may be able to make no matter how big or small. Also we would appreciate it if you could please spread this message far and wide. The links below provide more information on Susac Syndrome.

https://rarediseases.org/rare-diseases/susacs-syndrome/

https://my.clevelandclinic.org/health/diseases/15073-susac-syndrome

What your donation will be used for :