Ronan's Journey

Hello all,

We are organising this fundraising page to support the family of young Ronan William Devine.

Ronan is a handsome, brave, three year old who was diagnosed with a rare genetic disorder called Wiskott Aldrich Syndrome (WAS). WAS is an extremely rare genetic immunodeficiency that effects only up to 4 in every million people!

Wiskott -Aldrich Syndrome (WAS) is a unique among primary immunodeficiencies (PI) because, in addition to being susceptible to infections, individuals may have bleeding problems, develop Eczema and have an increased incidence of autoimmunity and malignancy. These additional complications lead to unique health challenges for individuals with WAS that are not typically seen in other forms of PI.

At present the only known treatment is a stem cell transplant.

Ronan’s sister (Elizabeth) and brother (Seán) were not a match for the transplant, so his medical team went to the stem cell register to try to find an unrelated match for Ronan somewhere in the world. Ronan has already gone through his first stem cell transplant which unfortunately has failed. The first round of treatment was tough on the family, also it brought with it unexpected costs both directly and indirectly. We are hoping to support Ronan as much as possible for this 2nd treatment. There will be travel and accommodation while Ronan is in for treatment. Once he is discharged his house will need to be adapted, his immune system will be very weak so, flooring and materials in the house will need to be replaced including bathrooms.

While Ronan's treatment is covered by the NHS Ronan's family will face huge financial pressures over the coming years. Ronan will be in Glasgow hospital for the coming months and then isolation for a year. Ronan's Na Na (Jane) will move to Scotland on Tuesday 28th May to help with Ronan's siblings. With Ronan being admitted for the second time on Wednesday 29th May to Glasgow hospital where he will commence conditioning and then his second stem cell transplant.

The projected timescale for Ronans journey from treatment to recovery is anything from 6 to 12 months. Ronan's mother (Emily) will be staying with Ronan in Glasgow hospital, during this time, while his father will be working and trying to take time to support his son and wife. Unfortunately, Ronan’s condition slips between the cracks for support systems.

Ronan’s sister, brother, cousins, Aunts, Uncles and grandparents want to express their love to Ronan by coming together with a cycle of Warriors with participants aging from 6 years old to 79 years old. Once Ronan's siblings finish school at the end of June their grandmother will fly them to Ireland so the extended family can help support their niece and nephew.

The funds raised will go towards the cost of building and remedial works to the family home, temporary accommodation, flights, medical bills and help keep on top of everyday costs of living for their family and home along with any unforeseen additional or emergency medical help they may need.

It is hoped that our fundraising efforts will raise some much-needed funds to support Ronan and his family, which will in turn help to ease some of the many stressful and anxious experiences that they have been through and are about to go through. It is also hoped that these efforts will help to spread awareness of what is such a little-known condition but has such extreme impacts on the people unfortunate enough to suffer from it.

Despite everything that he faces, Ronan continues to be a bright and extremely personable young boy that loves to chat and brings an amazing enthusiasm to everything he does, even when it comes to shaving his head because he knew he is about to lose his hair due to the treatment.

We would be so grateful if you could donate and share this worthy cause to all your loved ones and work colleagues.

Thank you kindly,

Love and light.