Warren's fight against Hurler Syndrome

Please help Warren and his family on his journey fighting against MPS I (Hurler Syndrome)!

In early July this year we got the devastating news that Warren  was diagnosed with Mucopolysaccharidosis I (MPS I, Hurler Syndrome).  It's a rare, incurable disease inherited by recessive genes but there are treatments available to help him with development as he grows up.  Warren has been receiving weekly five hour synthetic enzyme infusions (ERT) in Temple Street childrens hospital with the hope that these enzymes will help his joints to straighten and keep his organs healthy.  This treatment has been given through intravenous infusion every Monday. 

Warrens mother Leona who was heavily pregnant with her second child had the added stress of a commute from Cork to Dublin every Monday morning and also not knowing if her unborn baby could  also have the same condition as Warren. Thankfully baby Lucy was born only two weeks ago and has been tested and thankfully she does not have this syndrome.

The next chapter in Warrens journey begins in early October as he along with Leona and  Kenneth  {Warrens father} are heading off to Manchester Royal Hospital. They will have to leave newborn baby Lucy behind because of Covid restrictions for up to 3 months or even longer depending on how his treatment progresses.

His doctors believe a bone marrow transplant would be best to preserve his normal development.  This is an extremely high risk procedure as Warren will go through 2 weeks of chemotherapy before receiving his bone marrow donor cells.  The doctors will continue to monitor him while they wait for engraftment (when his body is reproducing only the donor cells) and keep him on a lot of medication to prevent sickness during this precarious time.  The ultimate goal is that his own body can start producing the needed enzymes so that they can pass through the blood-brain barrier (unlike the synthetic enzyme he is currently getting) and his brain can keep developing.

A transplant for someone with MPS I is different than for someone with cancer. He needs a center that has specific experience with his disease. That is why Leona,  Kenneth and Warren are relocating to Manchester for the period of 3 - 6 months.

They are hoping to stay at the Ronald McDonald House (if available) but are uprooting their lives to give Warren a chance at healthy development.   We're launching this fundraiser to help with the costs associated with this life saving journey - transportation, food, incoming bills, care for both Warren and Lucy.  After treatment Warren and his family will need to self isolate in a clean, controlled environment for anything up to a year to ensure that Warren does not pick up infections as his immune system will remain low and because of this Warrens parents will be unable to work. This will make the financial strain even more difficult.

We are hoping that by setting up this gofundme page we can help them cope better financially through this terrible journey. If you would like to help in any way possible it would be greatly appreciated. Whether through donations, fundraising, spot prizes etc. 

Thanks for taking the time to read our story. We will continue  to keep you updated on Warrens journey.

His doctors team wants to start treatment as quickly as possible to help give him the best chance. All of this is a lot to bear financially but there is really no other option to give Warren a fighting chance - any help is much appreciated!
  • CHRIS Harold  
    • €20 
    • 4 mos
  • Donough O riordan 
    • €10 
    • 4 mos
  • Anonymous 
    • €20 
    • 6 mos
  • Anonymous 
    • €20 
    • 7 mos
  • Tommy&Ayden O Donoghue 
    • €20 
    • 9 mos
See all

Fundraising team: Dawn Walsh (3)

Dawn Walsh 
Organizer
Raised €11,156 from 287 donations
Yvonne Dalton 
Team member
Raised €150 from 5 donations
Ciara Murphy 
Team member
Raised €55 from 2 donations
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