We are the parents of Harry who is our four year old son who has a very rare genetic disorder called MSL3 syndrome. He is currently the 1st child in Ireland diagnosed with this condition and there is less than 50 children worldwide.
This syndrome includes global development delay, neonatal hypotonia, delayed language development , intellectual disability, delayed ability to walk and progressive spasticity to name but a few . Because it’s such a rare syndrome and only newly discovered in 2018 there isn’t much information and very hard to know exactly what the developmental progress will be for the future .
We have decided to try to raise funds for intensive private therapies for Harry which include ,physio therapy, Occupational therapy speech and language therapy to name a few , while also help fund research studies for this condition. Intensive therapies are highly recommended by Harrys specialists, doctors and researchers in Germany. This is a life long disorder so getting as much therapies and help now is of vital importance to help Harry to progress and hopefully gain a better quality of life .
We would really appreciate any help or
donations towards Harry’s cause.
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