Seeking Moms Who's Children Have Marfans Syndrome

Hello there. My 7 yr old daughter was diagnosed with Marfan Syndrome. She has already had one lensectomy and will have the other in two weeks.

Her principal, the school nurse, and I are meeting this Thur to discuss does and don'ts. Please do not take it to heart do to the fact it sounds like they (school) has your child's interest first (which is what it should be).

I talked to her PE teacher, her reg teacher, and the secretaries at school and I am going to create a spread sheet for each one. This way we can have specific data for when we see the cardioolgist.

My reg email is ____@____.com. Please feel free to email me directly anytime. Trust me, for a while I felt that we were the "only ones". It is normal.

C. R

1 mom found this helpful

Hi there -
My cousin has Marfans. He played basketball all through high school and Marfans didn't affect him until he was about 40. He's in great health now and very active, a father of an adorable two year old! If you like, I can check with my aunt for resources for you (____@____.com)

Hey S.,

Last year in March my Adult cousin passed away. he lived a very full and active life with Marfans disease. He did not do sports, he never was the athletic type but he was active in so many other things. If you have all the info from your doctor and you inform your son properly he too will learn what he can and can not do. Since this does involve the heart just be sure you watch him closely.
Now my other cousin(his older brother)also has it but not as severe, he has passed it on to his son, who has it to the same degree as the cousin that passed. The son is 12 he plays soccer, baseball and a few other sports, he is a mild mannered kid but over all very active.
If you have any other questions let me know and I will talk to my cousins and see what they have been going through with AJ. Good luck and God Bless.
By the way did you know that Abraham Lincoln also had Marfans?

S.,

Sorry to hear about your situation. I have no advise but I wish you the best of luck. Please keep us posted.

L. Z

I don't know what Marfans is, but you could ask his doctor to write the school a detailed letter saying what your child is or isn't allowed to particiapate in at school. After your doctor does that, if the school still doesn't allow your child to particiapate you will have the right to conact a lawyer about why they are doing this. If this syndrome affects his learning abilities, there are also special education laws that can protect him.

There is a group called MUMS. They have a chapter here in Illinois. If another family with a child that has the same diagnosis registered with them MUMS will put you in contact with the family.

In regards to the school, your child would be most likely covered by Section 504 of the ADA. At some point you may want to let them know that you want to have a meeting so that they will accomadate your child using your input rather than just a unilateral decision based on what they think is best.

I too am parenting a child with disabilities but they are much more severe and very different from your child. If you need someone to communicate with contact me at ____@____.com