Suzanah Joy Hofer
It is with great sadness that in late 2019, Suzanah, our youngest niece of 5 years, was diagnosed with a rare (1:200,000) disease called Juvenile Metachronic Leukodystrophy (MLD), which has no cure. As far as we are aware, she is 1 of 4 people to be diagnosed with this disease in New Zealand (where Suzanah was born and lives).
MLD is an autosomal recessive genetic disorder (however it can be spontaneous) characterised by the accumulation of fats called sulfatides in cells. This accumulation especially affects cells in the nervous system that produce myelin, the substance that insulates and protects nerves. Nerve cells covered by myelin make up tissue called white matter. Sulfatide accumulation causes destruction of white matter throughout the nervous system, most importantly in the brain and spinal cord (central nervous system). This destruction of white matter causes progressive deterioration of intellectual functions and motor skills, such as the ability to walk and eat. People with this disease also develop loss of sensation in the extremities, such as incontinence, seizures, paralysis, inability to speak, blindness, and hearing loss. This disease is eventually fatal, the life expectancy in each case varies.
Understandably, this diagnosis has devastated and shattered the Hofer family and friends of Suzanah.
Given Suzanah’s prognosis, time is extremely precious therefore we aren’t going to waste any. Suzanah has never left New Zealand and her parents wish for her to see other beauties of this world before she is unable to. Suzanah’s parents are willing to take out further debt with the bank (which would cause even further hardship) to make this travel happen. This family is going through enough don’t you think?
Donations are not going to ease Suzanah’s and family’s pain or suffering, however, it may reduce some financial stress and provide Suzanah and family with special holiday memories.
During 2020 the Hofer family (Gabi-mother, Sean-father and Cleo-8 year old sister) are hoping to travel to a few destinations around the world that has special significance to them, to show them to Suzanah:
- London - where Gabi and Sean lived for 11 years, where sister Cleo was born. They wish to introduce Suzanah to many close friends and show Suzanah all the historic sites that she has only seen on TV;
- South Africa - where Gabi and Sean were born, grew up and then met before they relocated. Suzanah’s maternal grandparents live in South Africa. Her parents wish for her to experience a traditional African safari, of which Suzanah has only been told stories and shown pictures; and
- Turks and Caicos Islands - To show Suzanah and her family this slice of untouched paradise, show her sea turtles, take her paddle-boarding and swimming in the beautiful clear water. It is also where we live, her close family.
While this is an optimistic plan, this is the goal.
Everyone that donates (unless done anonymously) will receive updates and photos of Suzanah’s travel. This way you are able to read and see the beauty you have directly had a hand in.
Further, because of Suzanah’s kind and generous nature - she was recently awarded with an annual prize for compassion at school - 10% of donations will be donated to a charity of Suzanah’s choice. Donors will be informed when a decision has been made.
Any extra money donated above what is needed for this 2020 trip will go to Suzanah’s parents, to assist with the financial burdens to come. Again, donors will be kept up-to-date.
Thank you in advance for your extreme generosity.