Relief for family as Laois toddler Robyn (1) gets go-ahead for life-saving transplant

A BEAUTIFUL toddler with an extremely rare disorder will undergo life-saving surgery in November.

Robyn Neville-Quinn (1), whose parents Meagan Quinn and Adam Neville are both from Portarlington, will receive a bone marrow transplant next month at a London hospital.

Both aged 25, Meagan and Adam have had their first meeting with the transplant team and were relieved to hear that the operation will go ahead within weeks.

The successful pre-transplant assessment is a much-needed ray of hope for Robyn, who has the ‘one in a billion’ genetic disorder Wiskott-Aldrich Syndrome and will die unless she receives the transplant.

There is still a long journey ahead for the family, as the projected timescale for the operation, treatment and recovery is six to 12 months, or possibly longer if any complications arise.

Meagan and Adam moved to Belfast seven years ago but have a large extended family in the Portarlington area. As the couple face 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 £22,881 by 9 October.

In an update on the fundraising page on 5 October, Meagan said: ‘Last week, we travelled to London to meet the transplant team and we are relieved and grateful to say that Robyn's transplant is officially scheduled to go ahead in November. This is a major step forward in her fight against Wiskott-Aldrich Syndrome.

‘Robyn has a tough road ahead with the transplant and the recovery process, but we know she is a warrior. She has shown incredible bravery and resilience and with your continued love and support, we believe she will come out of this even stronger.’ Meagan added: ‘We can't express how much your support and generosity have meant to us during this challenging time. Your donations, messages and prayers have been a true source of strength for our family. Thank you again from the bottom of our hearts. We will continue to keep you updated as we move forward with her treatment.’ 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.

Pamela explained on the fundraising page: ‘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 Great Ormond Street Children’s Hospital in London.

Fortunately, Robyn's treatment will be covered by the NHS and the family says that any funds raised will go towards flights, accommodation, meals and everyday costs during her operation and long recovery.