Sean is our beautiful 5 year old boy who has the most infectious smile and mischievous personality. To look at Sean, he looks like typical little boy of his age but behind his smile is a medical mystery.
Sean is what is known as an S.W.A.N child (Syndrome Without A Name). What this means is that Sean has never being diagnosed with a particular syndrome although he has being diagnosed with numerous complex health issues.
When Sean was 4 weeks old he was admitted with a cold, to Our Lady’s Children’s Hospital in Crumlin. This was his first time being admitted to hospital and he remained there for 2 weeks, given that he needed oxygen to breath. Following this experience, our world slowly began to turn upside down and as more concerns were raised regarding Sean’s health. Sean failed to reach any of his milestones and doctors knew he was not a healthy little boy. Over time with lots of tests and several hospital admissions, more new health issues arose with Sean. Each time we left the hospital we were armed with new medication and new pieces of medical equipment. Furthermore, Sean struggled to gain weight which weakened his immune system and left him more vulnerable to gaining infections and due to his poor health, it would be more difficult for him to fight them off. This caused a lot of anxiety for us as having a disabled child was not something we were prepared for or even anticipated.
Sean is unable to walk or eat by himself, he is peg fed through his tummy tube. He is also nonverbal and has troubles with sleeping due to him needing oxygen at night for his severe obstructive sleep apnea. It is reasons such as these that Sean requires constant round the clock care and attention. Sean is completely dependent on us to wash and dress him despite being 5 years old. Sean receives his medication on a daily basis and we also have a lot of medical equipment to cater towards his well been.
Today, Sean is thriving and becoming stronger each day. (He even weights a healthy 21kg!) However, with this, we are faced with another issue, namely that the house that we live in is not suitable for his development. Due to limited space, Sean’s still sleeps in his mam and dads room in a tiny toddler bed. There are safety concerns relating to this, given that his bed is too small, and the fact that we must carry him up and down the stairs. It is for this reason that Sean requires a whole specialised downstairs configuration to our home, allowing for extra space to cater towards his needs. This would include a bedroom, an accessible bathroom with a ceiling hoisting system (to aide all his lifts and transfers), storage for all his medical equipment. It would also enable Sean to move around independently, thus improving his personal developments.
To do all this work we are looking in the region of €150,000. We have come up with some of the money ourselves but we are asking for your help to raise the rest.
We would be truly grateful to anyone who can assist us in any way to help us do this for Sean and to continue to give him the best life possible.
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Thank you for reading,
Sean’s Mam and Dad, Paula and Sean x
- Karen Denton
Fundraising team (4)
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