This incredible case follows Matt Horick and his family through their difficult medical journey. Matt had what seemed like to be a normal childhood up until he was 7 years old. His family had no idea that their child would never be the same and that their road to helping their son would be so difficult. Rare diseases can be so hard to diagnosis. Not only are they rare, but doctors don’t always recognize the combined symptoms. I could never do his story justice on here, but I can at least list a few of the symptoms and a brief version of the path they took to get a final diagnosis.

Some of the symptoms he showed over time:

• Toe was curved – doctor felt it was nothing to be concerned about it.
• At 7 years old, he had severe pain in his hip- doctor thought it was hip dysplasia and focused on rebuilding it when he was older (in his teens). Had to simply due with the chronic pain.
• Endured pain and became stiffer and more limited with movement. When 15 he was cleared for the surgery and for 10 months he recovered and found himself pain-free.
• At 16 he had a bad accident wake boarding. It caused severe pain throughout his body. A week later his family noticed a lump on his back. – Biopsy taken and found it was rock hard and not cancerous. Doctors felt it was Fibromitosis and chemo was started to reduce it.
• New CT scan revealed muscles were turning to bone-like structures. – Doctor re-looked at toe (believed to be a major symptom of disease) and realized Matt had FOP, one of the most disabling genetic conditions known to medicine.

 Final Diagnosis:

• FOP- Genetic material sends messages to your body on where and when your body needs to produce bone. With this disease, Matt’s genes are damaged and cause his bones to grow uncontrollably. Basically this condition traps Matt inside a second skeleton.
• Around 700 confirmed cases in the world.

 What is ahead for him:

• There is NO cure for this disease. This is a rare, crippling and fatal disorder.
• This disease flairs up with trauma. Active lifestyles aren’t a really good idea with this disease. Doctors believe that eventually the pressure will be too much around his ribcage and make it difficult to breathe.
• There is medicine for pain relief but there was nothing else they could do for Matt.

 

Matt Horick continues to live with FOP and is staying optimistic and enjoying each day as it comes!