MDA Mailbag Spring 2009

by Quest Staff on April 1, 2009 - 4:13pm

QUEST Vol. 16, No. 2

Letters to Quest: Camp is so important ** Moms on Wheels ** All camps not the same ** No guarantees (life expectancy) ** FMLA and sibling caregivers ** Pay for family caregivers.

Camp is so important

MDA summer camp is one of the greatest things that can happen for children with muscular dystrophy. My son, Corey, attended camp for eight years.

Like other parents, I was so scared the first year, afraid something was going to happen. The day I picked him back up I had to chase him down. He was a different child. He LOVED it.

In 2001, I dropped Corey at camp and got a call from the camp nurse two days after. She said Corey could not stand. They tried doing stretches and everything, and still he couldn’t. She said Corey didn’t want to come home and he could stay [because] he already had a wheelchair there.

I, at first, wanted to run and get him but the nurse let me talk to him. He begged me not to pick him up and said he was OK.

Two years ago, we had picked him up a day early. He cried all the way home. It was so bad I turned around and took him back. I found out they were having a dance and he didn’t want to miss that. We stayed for the dance and, to my surprise, I cried my eyes out with happiness seeing these children dancing and having a great time.

[Camp in 2001] was the last time I saw him walk. I am glad that his last steps were while having fun with friends who understood and didn’t make a big deal of it. To those who read this, summer camp is a great experience for you and your child.

[Camp] has given Corey the will to fight, hope and, above all, love, because he loves everyone at camp.

Angie Hounshell
Cincinnati, Ohio

Moms on Wheels

I have Friedreich’s ataxia and have used a wheelchair for about 15 years. I have been blessed with an amazing husband, and after the proper genetic testing, we made the decision to have children.

We carried out an exhaustive search for information on caring for children if you’re in a wheelchair. We were unsuccessful in our quest, and began this chapter of our lives without insight from other women that have endured similar circumstances.

After I had a baby, I vowed that I would share tips and information I picked up as I learned the ropes. Well, now that my youngest of three started kindergarten, I have some free time to dedicate to this.

I’m launching my blog, Moms on Wheels. It is my hope that it will get into hands that need this information like I did. I have also created a community inside the Facebook community Circle of Moms, called Mothers in Wheelchairs.

Shannon Klann

Editor’s note: To read more about Moms on Wheels, see the online article in Quest Extra!

All camps not the same

In the January-March 2009 Quest magazine article about MDA summer camp, “Breathe Deeply and Let Your Baby Go,” Tammy Guy, a facilitator for an MDA parent support group in Dayton, Ohio, said that both fear and guilt figure into parental apprehensions.

I don’t think that parents should feel guilty, because they take care of their children (or child) year round, but they should be concerned about the care that their child (or children) receive at camp.

When I went to Camp Kiwi when I was 6 years old (a camp for children without disabilities), I almost drowned because I swam without any supervision. After a lifeguard saved my life, the owner of the camp told my mother that he didn’t want to baby his campers.

Sandra Elluzzi
Somers, N.Y.

Editor’s note: MDA summer camps provide one-to-one counselors for all campers and rigorous supervision at all times.

No guarantees

My son recently passed away from Duchenne muscular dystrophy, five days before his 16th birthday. He had cardiomyopathy, was on heart medication and had been seen often by our cardiologist. He went into congestive heart failure and never recovered.

I was in a state of shock that it happened so soon. Duchenne kids are living into their mid-20s, even 30s; at least, according to articles that I read by MDA. As an average maybe that is true, but not in my case.

My point is, I had a false sense of hope and security. I want other parents to know not to count on this extension of life expectancy as written in stone. All kids are different with this disease. Perhaps I can spare other parents the worst grief of “complete shock.”

Dave Simon
Berea, Ohio

FMLA & siblings

I was one of the subjects in a Quest article in 2004 dealing with siblings with MD (January-February 2004, “The Other Children in the Family”). I thought I would give you an update. It looks like we are nearing the end stages.

My sister Barb, 46, has myotonic muscular dystrophy. Although she is still living on her own, I question how much longer this is to be.

We are currently going through a number of tests to discover how much the MD has progressed. The findings aren’t encouraging.

I now have three teenagers. Although they understand the situation, there are times they are resentful of my sister and the attention she demands. I still have times where I feel guilty for my feelings towards my sister. When she acts younger than my children, it bothers me. Sometimes her demands get numerous and none of my help seems appreciated. However I try to take it in stride.

Did you know FMLA (the Family and Medical Leave Act) doesn’t cover siblings? You are at your employer’s mercy and there is nothing you can do about it. The assumption is that there will be a parent, spouse or child that can be the caregiver who will qualify for FMLA. In our situation, my mother is now almost 73. My sister never married, never had children, my father has passed away, and it is just her and myself and my mother. My employer will allow me to take time off, however, if I fall below full-time hours I will lose my benefits, which include health insurance.

This is one situation I would like to bring to the government’s attention. I realize I’m not the norm, however I feel there should be some wording to protect siblings in such situations.

Lori Smith
Harvard, Neb.

Pay for Family Caregivers

I have a comment for “No help for single parents” (Mailbag, January-March 2009). If you have no problem moving to a different state that has a program where family caregivers can get paid to take care of their disabled family members, then it might be beneficial. Not many states have such programs. I have Duchenne muscular dystrophy. My mom currently takes care of me for six hours a day through a program of Washington State.

Jason Hubal
Deer Park, Wash.

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