Friday, December 22, 2017

"There are two children that stole our hearts and we will not let Duchenne Muscular Dystrophy steal them"

"Duchenne muscular dystrophy (DMD) is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year).” Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne. 
We began this journey with DMD in July 2013 when our 7-year-old son, Caeden, went to Children's hospital for a neurological evaluation and blood tests were conducted. We received a call several days later that his CPK levels were extremely elevated which indicates a muscle disorder. We then went to the Neuromuscular Disease Center at Childrens Hospital the following week where another assessment stated he was showing signs for Duchenne, Becker, or Limb girdle muscular dystrophy. 
We were shocked to say the least and researched all the disorders and hoped for none but if it had to be one not Duchenne. Caeden had genetic testing done to determine the form of muscular dystrophy and told we would get the results in about a month. We received the call about a month later which diagnosed Caeden with Duchenne Muscular Dystrophy(DMD). We were beyond devastated and a lot of tears were shed and so much uncertainty. 
Several weeks later we were told that Devin would need to be tested as well since it is a genetic disorder and it mainly effects boys. 
Devin had his testing and another blow Devin was diagnosed with Duchenne Muscular Dystrophy as well. We were not even able to process the diagnosis for Caeden and now we had to digest the same diagnosis for Devin. So many emotions especially since our only two children have been diagnosed with such a devastating disease. 
So where we stand right now is we live day to day and we love them. The boys have good days and bad days and we know due to the diagnosis there are a lot more bad days in the future. We had moved to a new home in July before all this happened and now we have a home with stairs to get in the house and for the boys to get to their bedrooms and that is not functional. The boys have a very hard time ascending and descending stairs. We need to add an addition so the boys bedrooms and bathroom are on one level and we have a lift to get them in our home from outside. The cost for this addition is $200,000. 
On top of all the boys medical expenses this is very hard for us to accomplish. We had to purchase a used minivan as it is a little easier for the boys to get in and out of however at some point in the future we will need a fully accessible van and they are very costly. We know there are many other things we will have to consider or think about in the future.

Right now HOPE is all we have. Hope that all these biotechnology companies and medical researchers will come up with a treatment that works to save our sweet boys and all the boys with DMD."

"There are two children that stole our hearts and we will not let Duchenne Muscular Dystrophy steal them"

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C & D UNITED For: Caeden and Devin Parisi

C & D UNITED- For: Caeden and Devin Parisi

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