This is my beautiful niece Evie. Evie was diagnosed with a possible cystic hygroma 21 weeks into pregnancy. After countless scans in both Waterford hospital and Holles Street hospital her parents Ciaran my brother & Katie his wife were left with 50/50 odds if she would survive delivery. She was delivered via Exit Procedure in Holles Street hospital. She is almost 5 months old and is still in Our Lady's Children's Hospital, Crumlin. She was born in Holles Street hospital and immediately rushed to Crumlin, she has a large cyctic hygroma or lymphatic malformation on the left side of her face which also effects her tongue and mouth. Because of the hygroma, her upper airway is blocked and she breaths through a tracheostomy
Her parents Ciaran & Katie have had to spend as much time as possible in Crumlin hospital to learn the specialised care it takes for a child with a tracheostomy. This has put a huge strain on the family as they have a 6 year old daughter Aila and live in Carlow. They have been staying in the Ronald Mcdonald house near the hospital but paying for that accommodation and rent and bills at home has proved very difficult. Ciaran has had to drop out of his college course and almost all of Katie's maternity leave has been spent by Evie's hospital bedside.
Evie is receiving sclerotherapy treatment for her cystic hygroma but she can only go through so much as it is tough on her especially at such a young age. She will then go on a drug called sirolimus which can be extremely tough on her immune system and may lead to further time spent in hospital. All of this means continued travel to and from Crumlin and more and more time away from the family home. Before Evie can be discharged from the hospital the family are waiting for a home care package consisting of specialised equipment for Evie's care and a nurse to care for Evie 7 nights a week as she needs 24 hour monitoring. Both Katie and Ciaran will be unable to work initially as Evie's care is so complex. This means continued financial strain on the household. We are hoping to get as much help as possible to support Ciaran and Katie with Evie's medical care. Any donation would be so gratefully appreciated. I've also shared a link to Ciaran's Instagram page if anyone would like to find out more info or would like to keep updated with Evie's progress. Thank you for your help.https://www.instagram.com/ciarandel87/