ClaudeStrong

At times it may seem like I’m not posting much on this page but please feel free to reach out with anything.

If anyone has any ideas on fundraisers please reach out to me.

I am a planner and it is very hard to play for things when we don’t know exactly how or when things will change with DMD. But we are playing some fundraising events for next year to help with purchasing a wheelchair accessible vehicle to get Claude to the places he needs and wants to be.

At Claude most recent appointment witch was about 2 weeks ago, his heart has very little almost not changes, his lung test were low so they will watch that a little closer and was given a list of things to watch for. He sees PT/OT (physical and occupational therapy) for them to see how he is going with mobility and fine motor skills. Fine motor skills are still pretty good but he had a significant decrease in mobility. His NorthStar (measures ambulatory and mobility) score was at a 10. Research shows that within the next year he may not be able to talk much on his own. But we know that every person is different and there are many many angles with god looking out for Claude in this. But they have suggested that he see the seating clinic to be fitted for a power wheelchair, this usually take about 6 months to get in after approved by insurance. But they are not sure if insurance will cover it due to him only have if his scooter for less than 2 years. But we will cross that bridge when it comes.

Claude has a restricted lung disease, he is in the beginning stages of left ventricle heart disease, Claude is vitamin D deficient and alol of causes/ side effects of the DMD. Claude ride a motorized scooter (a smaller version of the Walmart ones) for long distances and while he is a school. he also goes to physical therapy one a week to help maintain his mobility.

Claude goes to Children’s Mercy Hospital to see a team of doctors and specialists (literally like 10 professionals) every 6 months. He also see a bone and mineral doctors about ever 4-6 months and has to get blood work aboit every 2 months. And yea we have to drive to KC every time even for just blood work. Claude is only one 2 meds at this point a heart med and vitamin D. He was on a steroid for about 6 months but I had him taken off due to him gaining like 60 lbs in that period of time. The muscle and nerve team suggest he stay on it but for us the side effects outweighed the the benefits. Claude is very much involved in all of the decisions that are made with his health. We talk about it and research it until we are comfortable with the decision. If he takes a med and doesn’t like it we talk with the doctors and come up with a solution. Even though he is only 11 I do not keep much from him about his health. Something’s I do not tell him until we are certain about them mainly to not stress him out about it. He is still a kids and I don’t want him to be overwhelmed or feel like he can’t be a kid.

Most boys are diagnosed around the age of 4 with DMD, Claude was 9. So we are still learning and trying to play “catch up” with all of the changes. Things have seemed to progress very much since the diagnosis. But Claude is so very optimistic about things. There are times when he ”hates his disease” mostly when he can’t ( physically can not) do something he wants.But he is very determined to find a way to do what he wants.

https://www.parentprojectmd.org/about-duchenne/what-is-duchenne/

Is a very good website if you wanting more information about DMD

Duchenne Muscular Dystrophy is a rare disease and is the most progressive and aggressive forms of Muscular Dystrophy in boys.

Duchenne muscular dystrophy is a genetic disorder characterized by the progressive loss of muscle. It is a multi-systemic condition, affecting many parts of the body, which results in deterioration of the skeletal, heart, and lung muscles.

Duchenne is caused by a change in the dystrophin gene. Without dystrophin, muscles are not able to function or repair themselves properly.

Claude is my 11year old son. He has a twin sister and two older sisters as well. He is very full of life and is a mama’s boy through and through (just like his dad) Claude love to play with his hot wheels and love cars and trucks mainly Fords. He love to help anyone who is working on them and watching India of videos and shows about cars. Claude is very protected by his sisters, myself and the rest of his/out family. Claude loves to be around family and friends.