Robyn's Journey

Hi, everyone.

We are reaching out to you to support the family of Robyn Neville Quinn. Robyn is an adorable 1 year old girl who has unfortunately been diagnosed with Wiskott -Aldrich Syndrome (WAS). WAS is a rare and life-threatening genetic disorder that primarily affects boys. For Robyn, a girl, to be diagnosed with this condition is incredibly rare (one in one billion).

Since birth, Robyn has faced numerous health challenges. Within her first few weeks of life, following countless visits to A&E for bleeding and severe eczema, it was discovered that Robyn's platelets were dangerously low, at just 5. Normal platelet levels range between 150 and 450.

To manage this, Robyn needed a central line inserted and weekly platelet transfusions to support her immune system. Because Robyn has a compromised immune system, she is at serious risk of developing infections.

Although a medication introduced after her first birthday has helped her to produce more platelets, this treatment is not a permanent solution. Eventually, it will cease to be effective, making a bone marrow transplant essential to save her life.

Due to the rarity of WAS and the complexity of the transplant, this procedure is not available in Ireland or Northern Ireland. Therefore, Robyn and her parents, Meagan and Adam must travel to Great Ormond Street Hospital in London.

Meagan and Adam are a young couple, both only 25 years of age, who moved from Portarlington, Co. Laois to Belfast and started their family. Robyn does not have any siblings. Unfortunately, she does not yet have a donor. However, as soon as her match is found, this life-saving operation can go ahead.

The projected timescale for her operation, treatment, and recovery is 6 to 12 months, or possibly longer if any complications arise.

Meagan and Adam will face significant financial pressure over the coming years. Meagan has been unable to return to work due to Robyn's illness. Adam has needed to, and will continue to need to take time off from work to travel to England and support his family during Robyn's transplant and recovery. Thankfully, Robyn's treatment will be covered by the NHS. Any money collected will go towards flights, accommodation, meals, and everyday costs during this time.

We would be so grateful if you could donate to this fundraiser in any way you can, and please share Robyn's Journey.