Jamie wants to walk

My Son Jamie Mannion has blue eyes, a beautiful smile and curly hair, he is the  second child of myself and Declan and was born in 2012. He is the younger brother of Ryan, who is nearly 11, he goes to Portlaoise Educate together, he's  great big brother, loves being outdoors and playing basketball for the Portlaoise Panthers. His Dad Declan is a Roscommon man and proud Rossie supporter, he gets to as many matches as possible and Jamie is a proud owner of a rossie jersey. He was involved in Ballyfin GAA for a time when we moved to Laois 13 years ago and loved his 5  a side soccer, and golf in Mountrath until he had to spend more time at home to help with Jamie. I (Siobhan) am originally from Chapelizod,  have kept myself well physically and mentally over the years with fitness classes in Your Town Fitness with the McGills and in Ladies Only Lifting Gym, who are so supportive of us and become a tribe. 

Jamie is nearly 8 years old, when was 5 months old we started to notice that he wasn't reaching his milestones and our journey to a possible diagnosis  began. We have seen every type of doctor possible, and had many psychology visits.
We have yet to receive a full diagnosis, he has a severe intellectual disability and global developmental delay with  the developmental level of a 10-12 month old baby. Devastatingly Jamie was also diagnosed with focal epilepsy a year ago, which has brought its own complications, Jamie receives expensive supplements and important dietary intervention.

We have worked really hard to help Jamie to date, he is progressing slowly and can pull himself to stand aided and is still doing lots of crawling, and some climbing too :-).  
Jamie is also non verbal and he needs prolonged intervention to help him find his voice, be it verbal or through the use of a device.

Two years ago Jamie started using a Mollii suit which provides electrical stimulation via the specially designed garment. The Mollii suit helps his body relax, for one hour every second day, is the only time that Jamie's body is still. He will need a new one every two years.

As Jamie has an undiagnosed condition we need to bring him to the USA for specialised treatment in neuroplasticity and intensive intervention to help him learn to walk. He needs the functional neurology tests they can carry out there and the therapy they provide both during his time there and in the time following with a home programme.
He is in need of intensive intervention over a prolonged time in order to help his body and brain get stronger he needs access to intensive therapy, state of the art equipment and experts in the field of disability services. The Napa Center in Boston are renowned for their 3 week intensive therapy programme and Jamie badly needs their expertise.

We don't know for sure what the future holds for our bright eyed, curly haired little boy but we are determined to do everything possible to help him reach his potential and we need your help and support to achieve our goal. We know he has a lot of potential that needs to be unlocked.

We also want to take this opportunity to support the Jack and Jill foundation who was there for us when we needed their support, they did so with kindness, compassion and without haste. Jamie also attends a fabulous school , St Annes in Roscrea who not only supports him but also us as a family and complete the programmes asked of them and so much more, a percentage of funds will be split between them as a token of our thanks and also so that they can continue to support families like ours.

Donations

  • Roisín Kelly  
    • €10 
    • 8 d
  • Taylor Moran 
    • €12 
    • 9 d
  • Michelle McGovern  
    • €20 
    • 9 d
  • Josie Lavin 
    • €20 
    • 9 d
  • Kearneys Chemist 
    • €100 
    • 10 d
See all

Organizer

Siobhan Ryan 
Organizer
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