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.
Mylo is the sweetest, most loving little boy I have ever met and brightens anyone's day up. He is rather cheeky and where ever we go he likes to say "Hiya" to EVERYONE! If they don't hear him the first time, he gets louder! When they notice he then gives them the biggest smile ever! 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.
Thanks so much for taking the time to read about our amazing boy, Cara x
1 Projects Created
Joined 6 - 15 - 2021