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Help Theo live his best life with SMA 1

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Aim of Fundraiser:
 
We have setup this page so we can raise funds for Theo's future and ensure he will have an amazing comfortable and happy life at home.

Theo received #zolgensma dose on the 8th of December. This therapy will help him so much and we are grateful for this as it became available just in time for him in Ireland.

We want to make sure we can support him at home properly and bring him to all the best medical/physio/occupational appointments to benefit from the therapy.

Theo's Story:


Theo Frank Whelan was born on the 29th of April 2021. He was diagnosed with SMA type 1 (spinal muscular atrophy) on the 19th of August 2021 which is a very severe disease in infants. Infants with type 1 have limited movement, can't sit without support, and have trouble breathing, feeding, and swallowing.

Natural progression of the disease meant the diagnosis was terminal and infants did not live to see their second birthday. Outcomes for the disease have changed in recent years with the availability of new therapies that target the underlying genetic cause of the disease. However these therapies will slow or halt the disease but are unlikely to reverse damage done before his treatment.

This wasn't the vision we had when Theo was born and as a family we need to adapt to help him which is why we are sharing our story and have created fundraiser as any small donation will contribute to him receiving the best care.
 
Theo's current care needs:

He requires a lot of specialised care from us at home already.
  • BiPaP breathing machine at night and naps to help his breathing and energy and will continue to have enteral feeding.
  • 24/7 monitoring as secretions not managed can result in respiratory distress which we experienced.
  • He will need physio and cough assist and suction 2-3 times a day at least that we can do for him.
  • Regular hospital appointments and weekly physio (this will increase as he gets stronger), occupational therapy (OT), speech and language therapy and hydrotherapy.
 Needs in coming years:
  • Hospital visits and extended stays and money towards his private physio needs.
  • Hydrotherapy to help him with flexibility, mobility and strength.
  • Adaptation of his home to make it more accessible for him in his childhood.
  • The ability to buy him any personalised equipment he will need.
  • Often in SMA type 1 children scoliosis (spine curvature) can develop and the funding will be used also for surgery/rehabilitation should this arise in coming years.
  • Savings for any further treatments that we hope will be available in the future.

All money raised will be used for Theo to have the best quality of life.

Our goals as parents:

We have setup a Blog and Instagram to show and help other families understand and overcome the difficult obstacles of the disease and our aim is to show Theo's progress which should help other families with this life changing diagnosis.
Our other aim will be to raise more awareness for SMA in Ireland. We aim also to support the heel prick test so that future families can access the treatment early (before symptoms start).
 
Any donation, no matter how small including kind words is welcome and will mean a lot to us on his journey.

He is an amazing boy that will touch the lives of many and we just want to make sure we can give him the best quality of life possible.
 
Thanks for your help and your support.
 
Shane, Stephanie and Theo :)
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Donations 

  • Aoife Doherty
    • €20 
    • 3 mos
  • Aileen O Shea
    • €20 
    • 4 mos
  • Jill Turner
    • €50 
    • 4 mos
  • Emilie Beaufils
    • €30 
    • 4 mos
  • Sara Stobe
    • €25 
    • 4 mos
Donate

Fundraising team: Team Theo Frank (2)

Shane Whelan
Organizer
County Kerry
Stephanie Vaz Vieira
Team member

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