Blue Bear Benny

Ben is a little boy with Down's Syndrome - complex Trisomy 21. He is currently under the care of 8 different specialists and practitioners for hi multiple co-morbidities.

Ben was born with a congenital heart condition that required major heart surgery for AVSD repair in 2021. He will require constant cardiac follow up - his Mam has been fully trained in resuscitation techniques should he require this. His follow up treatment will continue through the cardiac specialists in Crumlin Children's Hospital

Ben also requires a feeding tube - his diet is very stringent - he can only tolerate particular foods and textures and as a result of this requires a PEC feed - this is something his Mam has to monitor daily and is also trained to change out the feeding tubes.

Ben is prone to recurring bouts of pnuemonia and tonsilitis at over his young 3 years he has required intensive hospital treatement for his chronic ailments. He often requires the use of mobility supports to aid with walking.

Ben will require permanent care throughout his life - and he has the complete gold standard when it comes to his amazing Mam. As ben gets older he will require more supports with transportation. Current he is availing of the Bumble Bus Service when it is available - and the fantastic Dylan at the Order of Malta Wexford has provided alternative supports for transport when required for hospital appointments. This is an incredibly stressful undertaking for his Mam every time to try organise these modes of transport as they may not always be available - leaving her requesting lifts from friends as it is difficult to bring Ben on public transport as he is so high risk it would leave him open to contracting infections due to being immunocompromised

Michelle Bens mum has been trying to save to afford a special mobility van to transport Ben to and from his appointments. This would offer the freedom to hop in the van and drive herself and Ben without the additional hassle of organising lifts from external sources. It would also reduce the stress on Ben of having to be placed in unusual environments each time he requires support to get to Dublin which is a few times each month for follow up. If he becomes ill then this requires additional stays and follow up - the expense of this really is clocking up for the family. Michelle is a solo parent doing all of this on her own. It is incredibly hard to save when so much is being spent already to manage medical necessity.

Blue Bear Team are organising this fundraiser in the hope of raising 20,000 euro to purchase a mobility van that is wheelchair friendly for Ben - this vehicle would make such an incredible difference to this families life. Ben's mam is so fantastic with him - she would do anything to see her boy do well. She so deserves a bit of support to help them on their journey.

We know everyone is so stretched right now - even if all you can afford is the price of a coffee - it would make such a huge difference.

We will continue to provide updates on lovely Ben.

Thank you so much for taking the time to read this - even if you cannot afford to donate at all - a share of this fundraiser on your social media would go a long way to helping us reach our target.

Thank you so much for taking the time to support Ben.