Hemiplegia normally occurs during pregnancy, or very quickly after birth.
Parents are lucky to get a few moments with their child before this condition changes all of their lives forever. Devastating isn’t a strong enough word for this situation.
For 14 years now, the Platt family has lived with hemiplegia.
Vicky Platt describes it as her family’s living situation because her daughter’s condition really does affect everyone. Hemiplegia drastically limits physical movement on one side of the body. Doing normal, everyday tasks can require a helping hand. The Platt’s entire family is involved in the process because they want their daughter to live life as fully as possible. Who wouldn’t?
Hemiplegia drastically limits physical movement on one side of the body. Doing normal, everyday tasks can require a helping hand. The Platt’s entire family is involved in the process because they want their daughter to live life as fully as possible. Who wouldn’t?
Vicky also speaks to the importance of spending quality time with her other child, who doesn’t have hemiplegia. Although so much of each day is taken up by the disease, she says she has to remember that there’s a life outside of it, too. As difficult as it is to find room for a break, there have to be moments where the disease isn’t her primary focus.
You have to let your family live, too.
Vicky says she finds comfort knowing that there’s 30 million other Americans dealing with life with a rare disease. Although every illness is different, many challenges are the same. Through online forums, support groups, fundraisers, and events, she’s been able to connect with many others in the rare disease community.
If you’re feeling alone in your struggles, don’t be afraid to reach out to someone like Vicky, someone who can relate to your situation on a different level than your other friends. There are other families out there like yours, and there are ways to manage.
Read more about the Platt’s story here.
