Jack Green is thirteen years old and has Duchenne Muscular Dystrophy (DMD). He was fitted for a wheelchair when he was eight and was too weak to walk by the age of nine.
Duchenne is a rare genetic disease, it is a type of muscular dystrophy that primarily affects males and causes the muscles in the body to become weak and damaged over time. A condition which has no cure.
Nadia Smith, Jack’s mum, says that every DMD boy is different, “but in Jack’s case, he is progressing a little faster than most and now his heart is affected.”
Jack has been in Auckland receiving life-changing surgery to correct the curvature of his spine.
“We have talked about spinal fusion since he was diagnosed at five,” says Nadia, “so we knew it was coming, just didn’t realise it would be this quick. Jack’s back was curved at 57 degrees, so surgery was a must.”
They travelled to Auckland, from Richmond, for admission for the surgery on April 12. “We had chats about all the risks, had lung function tests done, all ready for T2 spinal fusion surgery on April 16.” Nadia tells us the surgery went well, “but the toughest part was yet to come, the recovery.”
“Ten days after the surgery they discovered Jack had an infection on his back.” From May 1, he had two debridements a week, “five more procedures done at Starship Hospital. A tiny wound in his back ended up being the size of two fists. He was malnourished, had no energy and was not bubbly Jack at all.”
On May 17, after five weeks, they were transferred to Middlemore Kidz First Children’s Hospital to hopefully be fixed. “Four more procedures later, and finally wound closure on June 1,” says Nadia.
But Jack’ s journey has taken it out of him. All the anaesthetics, the antibiotics and the procedures have taken its toll on his body. “his whole body was very puffy. I asked the doctors to check his heart, as he had symptoms of cardiomyopathy.” After three weeks, a test was done. “Turns out he had a dilation of his left ventricle so had to be booked in for an MRI.
“Jack had the MRI on July 2 and was diagnosed with mild cardiomyopathy, which was likely caused by all the operations.”
Jack has had the last of his stitches taken out on July 4 and his mum couldn’t be happier! “He gave us a little bit of a scare but he is now, finally, on the mend.”
They are looking forward to getting home and being amongst loved ones again, “Eleven general anaesthetics in six weeks, a lot of time away from family, friends and school, and separation from his beloved pets. We are looking forward to getting home!”
Life will continue to be a hard road for Jack and his mum when they get back, he will still need constant care.
Nadia has set up a givealittle page to help get Jack some specialised equipment that will give him a better quality of life. If you would like to help make Jack’s journey a little bit easier, go to www.givealittle.co.nz/cause/jack-and-duchenne-muscular-dystrophy to see how you can help.