Jack McCarthy is four years old and was diagnosed with type 2 Stickler Syndrome at the age of two. Jack is totally blind in his left eye. This happened when Jack was three; he got an infection in the eye after an operation and subsequently lost his sight. The sight in his right eye improved slightly after getting a cataract removed.
Jacks mother Clodagh also has Sticklers Syndrome and Glaucoma. Clodagh says “I only found out when Jack was diagnosed that I had Sticklers Syndrome too, I had problems with my eyes and joints but it was never diagnosed.” Clodagh has had many operations on her eyes; she says “I have had two cataract operations, two retinal detachment operations and laser on my eyes”. These operations were successful. Clodagh remains able to drive with some difficulty at times due to Glaucoma.
Jack has had eight operations on his eyes which tried to save his sight. Jack has to travel to Cambridge in the UK as there is no Sticklers Specialist in Ireland. He has just had Cryotherapy which is the freezing of the retina and will have to return to UK for check-ups.
Clodagh and Jack have a love of horses and horse riding. Jacks hobbies are horse riding, speech and drama and dancing. These are great hobbies as he is unable to take part in contacts sports due to the risk of his retina detaching.
Clodagh found NCBI on the internet and got in contact two years ago. Jack’s NCBI Community Resource Worker has made a great difference to his everyday life. She come to his house to assess him and also visits his school to make any alternations needed. Clodagh says, “There are small things she points out, like not to put Jacks cup to the left of him as he may not see it there. She also makes suggestions in Jacks school as to where objects should not be placed and where he should sit.” She ensures that Jacks home and school life is accessible, comfortable and eliminates any unnecessary problems