Support Isai's Fight Against Duchenne Muscular Dystrophy

Dear friends, family, and everyone who may read this:

Let me start by saying, anyone who knows my husband Jose knows that he is a very private person. I usually try to respect my husband’s privacy by doing my best to not overshare, but it is time for us to swallow our pride and ask for help from those around us. Whether that be through prayer, sending positive thoughts, words of encouragement, or helping us with our current financial situation, we hope you know we are so beyond grateful to all of you. So with that said, here is our story.

We have 4 beautiful children, 3 boys and a girl. Christmas of 2023, we noticed that our 6-year-old son Isai (Isaiah) had started to tiptoe walk and complain of muscle pain. With it being the holidays, we didn’t rush to the doctor as he seemed to get better with some home remedies. It wasn’t until March 2024, when nothing seemed to help, that we took him in and asked for a referral to PT. He immediately qualified for weekly physical therapy and was referred to a neurologist for further genetic testing. Our world shattered as we had no history of any disorders this severe within our family. After waiting over a month for our first appointment, we found that our first neurologist did very little and showed almost no empathy. Feeling lost and alone, we reached out to other families who had children already diagnosed and with their referrals found a new provider. Having switched providers so early on meant that we had to redo all of his testing. We drove back and forth from appointment to appointment, missing work and traveling a total of 5+ hours to and from my parents in order to have reliable care for our other 3 kids. We were also suddenly forced to move after a sudden rental increase of almost $500, which was something that we could not financially sustain with all the traveling and missing work. We scrambled to find another home and did find a temporary home but had not moved in 9 years and only had 3 weeks to do so.

In the middle of all of this, we finished testing and officially received a confirmed diagnosis of Duchenne muscular dystrophy for Isai. With this being an incurable genetic disorder, we were referred to the nearest muscular dystrophy clinic with an entire team of specialists in Iowa City, 5 hours away from us. So again, we drove a total of 10+ hours to get our 3 kids cared for and Isai to his first appointment plus physical and speech therapy every week. Much to our dismay, insurance began to give us issues resulting in an appointment with a different specialist almost every week after his initial consult. This led my husband to find new employment with better benefits in order for our son to receive full coverage for his treatment. We also discovered that our son isn’t missing exons in his gene, as is most common with DMD, but rather has a stop codon on one of them, severely limiting his therapy options for genetic replacement. All we can do now is test regularly to find any issues early on and do our best to treat them as they appear.

For those of you who don’t know, DMD is a degenerative muscle disorder that will slowly and surely take our son’s mobility as he ages, eventually leading to more care and him becoming completely reliant on us. All we can do is slow down the process through medication. No parent is ever prepared to deal with something like this either emotionally or financially.

One of our biggest burdens at this time is financial as we took a huge hit with my husband switching jobs and his new employer only paying once a month and a month behind. We have also run into issues with both our vehicles due to all the extra traveling, and to make matters worse, my son’s medication is now making him aggressive and intolerable, which requires another specialist. Emotionally, we are all struggling to adjust as we grieve and try to process all these changes. His siblings have taken a bigger hit as they had to put aside most of their regular extracurricular activities while their brother’s care has taken priority. It’s not fair to Isai and definitely not fair to his siblings to have to deal with so many changes all at once.

Our world as we knew it has changed and will never be the same again. We are desperate for help and for some sense of normalcy in our lives at this time. We have been ashamed to admit we cannot do this alone, but our children really deserve so much more and lots of grace as we adjust to our uncertain future. With humble hearts, we ask for any help we can get no matter what form it may come in. We believe strongly in the power of prayer and words of encouragement, but if you can contribute financially, those funds will go toward paying for travel expenses and maintaining a good vehicle in order to travel safely to and from appointments, as well as covering the days my husband has to take off to travel. Lastly, any remaining/leftover funds will go toward paying for anything that has not been covered at this time due to our financial decline. As a parent, it has been so hard to watch my children try to navigate this new world and even harder to admit we have fallen into a place where we can’t offer them what they deserve at this time. Again, we thank each and every one of you for your support no matter what form it may come in. Thank you