In June last year 4 year old Mackenzie suddenly began to have trouble walking, and she has been in and out of hospital ever since. Her medical team have just recently diagnosed her Metachromic Leukodystrophy, a very rare genetic metabolic disorder. Children with this cruel disease are slowly robbed of their ability to walk, talk, hear and see. Currently, Mackenzie’s only symptoms are lower limb weakness – she often needs to use a wheelchair and she requires assistance getting off the floor.
The way Mackenzie has handled her new challenges has been astounding. She has never once complained, and she finds a way to do everything she did before the onset of her disease, including dancing with her sister and playing at the park. Surprisingly, she is still very independent and will speak up when she needs help. She works so hard at her therapy sessions and she will tell you that her motto is ‘never give up’ or that when you fall down, as she often does, you ‘just get back up’.
Mackenzie will undergo an unrelated umbilical cord transplant in early February. This treatment has potential to alter the course of her disease and provide a better quality of life going forward. It cannot reverse or cure any damage already done, but a recent MRI showed no effects in her brain and given that her symptoms are currently only lower limb weakness her family are hopeful it can make a big difference!
The transplant process is brutal and commences with 9 days of intense conditioning chemo to destroy her bone marrow, followed by the transplant itself. Then she will remain in isolation in hospital until the donor cells have successfully engrafted – usually around 50 days after transplant. After that she will be allowed to return home, but will still need to remain in isolation until 100 days post transplant.
Mackenzie has a long road ahead but with her family’s love and support she will continue to take it all in her stride, make the most of every day with a smile on her face and she will never give up!Share