Family in a desperate appeal for little Robyn as she faces life-saving surgery

A young Laois couple whose daughter will die unless she receives a bone marrow transplant have made a desperate appeal for help.

To donate or read more about Robyn's journey, click here.

Robyn Neville-Quinn is only one year old but has severe medical issues, since she was diagnosed with a ‘one in a billion’ genetic disorder. Only a bone marrow transplant will save her life.

An extremely rare life-threatening condition, Wiskott-Aldrich Syndrome (WAS) mainly affects boys. Only 20 girls worldwide, including Robyn, have been diagnosed with the disorder.

Robyn’s parents Meagan and Adam Quinn, both from Portarlington, will travel to a London hospital in October when their little girl will have a pre-transplant assessment.

Now aged 25, Meagan and Adam moved to Belfast seven years ago but have a large extended family in Portarlington who are supporting them every step of the way.

Meagan’s mother Sabrina Moran, who lives at Cathair na gCapall in Portarlington, regularly travels to Belfast with other family members to see her beloved granddaughter and to help the couple with housework and everyday needs.

Sabrina told the Laois Nationalist: “Despite everything she has been through, Robyn is so bubbly and happy and gives her best side no matter what. She has to go into hospital every couple of weeks for platelet transfusions and cannot mix with other children, as her compromised immune system means that she is very open to infection. Yet she always keeps smiling.” 

A past-pupil of Coláiste Iosagáin, Adam has to take regular time off work due to Robyn’s medical needs, while Meagan had to give up work to care for her daughter full-time.

As the family faces a big struggle financially, Robyn’s grandaunt Pamela Quinn from Bracknagh, Portarlington, set up an online fundraiser in August with a target of £50,000 (€58,683.75). The gofundme titled ‘Robyn’s Journey’ reached almost €15,000 by 5 September.

Pamela explained on the fundraising page: ‘We are reaching out to you to support the family of Robyn Neville-Quinn. Robyn is an adorable one-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 five. 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, the procedure is not available in Ireland or Northern Ireland and will have to be carried out at the renowned Great Ormond Street Children’s Hospital in London.

Pamela said: ‘Meagan and Adam are a young couple, both only 25 years of age, who moved from Portarlington 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 six 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, while 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.’ 

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