Our Story

Our son, Mylo has a rare genetic condition called - UNC 80 Hypotonia. This condition is a UNC80 deficiency and is characterised by hypotonia, strabismus, oral motor dysfunction, postnatal growth deficiency and developmental delay. Most individuals do not learn to walk. All individuals lack expressive language however, many have expressive body language and a few individuals use signs to communicate. Some individuals can also have seizures. Roughly 19 worldwide have this condition. Individuals vary and it can be like any other condition and affect individuals from severe to mild. The affects this condition has on Mylo is he is unable to walk or crawl but is now weight bearing with specialist equipment, he is extremely flexible which affects him in all aspects of life to even the simplest of tasks like holding a cup. Mylo is also delayed with his speech saying very few words. Mylo is also low toned (muscle) and mainly in his upper body. With lots of daily physio he is now able to use his arms, hold his head and sit unaided. Due to Mylo being low toned he doesn't move around a lot therefore, he has extreme constipation which he is now on lactulose as unfortunately back in December last year Mylo had a bowel prolapse. Mylo is also classed as failure to thrive as he is a lot smaller than children his age. After a year of testing from MRI's to blood tests, Mylo was finally diagnosed in August last year (2020). Currently we are learning Makaton to help Mylo bring his speech on and build better communication with him.

In April of this year we had Mylo's OT (Occupational Therapist) complete an assessment for his needs as he is now 2 and growing, (though his mobility is still very much reduced and requires to be carried), we wanted to start the process for Mylo’s adaptations.

The assessment found that although our property is suitable for a stair lift, now and longer term that isn’t Mylo’s needs or requirements and that downstairs living is best and the OT’s professional opinion. The case went in front of our local council for a grant for an extension for a bedroom and a wash/wet room facility for him. The decision was made that the Council would fund the wetroom. Having the extension completed for Mylo would benefit him in so many ways. This would allow him to have the best possible life and independence that any child should have and hopefully when he learns to crawl he will be able to go to his bedroom etc without waiting for one of us to take him up to his bedroom. For an bedroom extension to be built, we are looking at around £34,000.00.

Mylo is the sweetest, most loving little boy I have ever met and brightens anyone's day up. The love he has for everyone especially his Sister, Charley (age 6) is so lovely to watch. The bond that they have, I couldn't of wished for a better bond. To be able to give him what he needs and deserves in life is all I can ask for to allow him to have the best life he can. We are so proud of Mylo and all he has achieved to date. He is our own little warrior.

David (Mylo's Father) and I would be forever grateful in any help we can get to make the above possible.

Thanks so much for taking the time to read about our amazing boy, Cara x

Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds for vital home adaptations for a disabled child, to continue to care for their child at home, safely and with dignity.