Mylo was diagnosed with multiple hereditary osteochondromatosis at the age of 2 years old following a full skeletal due to frequent falls.
This is a rare bone tumour disease affecting 1 in 50,000 people, it causes Mylo chronic pain and fatigue ending in countless operations.
Mylo has always had communication difficulties and will hide under tables or in his arms when he struggles with his emotions. Mylo also likes a structured routine and is strict on lateness, often refusing to leave the house to go out if his times are not met. Socially Mylo feels that his friends don’t like him but the reality is Mylo is very black and white and doesn’t always understand his friend’s “banter” and jokes. Mylo’s autistic traits are linked to his MHE which are always being reviewed by a paediatrician.
Mylo had his 3rd leg operation with an epidural where everything seemingly went well. On arrival home Mylo would attempt to weight bear on his legs but this caused Mylo to pass out, be sick and have a headache, all of which are signs of a spinal fluid leak.
Here is where we were rushed back into hospital for a blood patch operation, and MRI and where Mylo had to lie completely flat for 48 hours to see if it worked. Unfortunately it didn’t so the process was repeated and it was second time lucky. The only remaining symptom is that Mylo now has partial paralysis to his right leg below the knee.
Three years ago Mylo had a month long episode where he woke every morning with vertigo and was instantly sick with a strong headache.
Mylo was admitted into hospital for an emergency MRI of his brain as they suspected he had a tumour. Following the results everything was clear but Mylo was still having these sickness and spinning episodes daily. We saw a specialist consultant in the hospital who diagnosed Mylo with cyclical vomiting syndrome. He follows a careful diet and avoids anything that contains caffeine, chocolate and cheese and the symptoms are managed well now.
Mylo has always suffered with terrible foot pain that we put down to the bone tumours in his legs and ankles. Following an X-ray of his feet only two years ago it was discovered that his heels were very splintered and hadn’t formed, he now wears jelly heel cups from his orthotics team and these have helped ease the pain.
Mylo’s 12th operation has just happened only three weeks ago. Mylo has had a corrective osteotomy to his right arm which has already been operated on three times before. He has a plate in the radius and an external fixator to lengthen his bowed ulna which has shortened due to deformity caused by his MHE.
We have just finished turning the key at home and he is currently fighting off a pin infection which we have been told is very common.