Who should I see about fund raising for my son who has Marfan’s Syndrome? He needs glasses, special shoes, and he also has scoliosis and will require heart surgery when he’s around five years old. He is three-and-a-half now and we make a lot of trips to different doctors appointments. I have three other children to care for as well and my husband only works part time, so I look forward to hearing from you soon about some different steps I could take.
The extra costs of having a child with a chronic illness are significant. Travel, time off work, meals out of the home and babysitting can cost thousands of dollars each year.
I would encourage you to contact your local service clubs such as the Lions Club or the Kiwanis Club or your local member of the legislature. In Nova Scotia the list of Members of the legislature is available here. They may not be able to help you directly but they would know who, in your community, is working to help kids with chronic illnesses such as Marfan’s.
There is a US Marfan Foundation that may also offer ideas. I would also ask your doctor to put you in touch with the hospital social worker who may have some ideas to help cover these costs.