My name is Joel Hernandez, I am an active duty service member and father of six children of whom four reside with me. I would like to tell you the story of my youngest son, Joel Jr., who was diagnosed with Duchenne Muscular Dystrophy at the age of eight and is now age 12. We are currently stationed at Fort Lewis, Washington, living in on-base housing. We have several dogs that we take out with our kids when Joel Jr., who likes to be called Joey, feels like he is up to the task and not so tired. When you see us out and about, our children are happy. People see us getting the best parking spot, right at the door, whenever we go out. You see the wonderful photos we post, where everyone can see that we’re having a great time.
Young boys are dying from Duchenne. Not in their 20s, but at 10 or 12 or 16 years old.
When he was first diagnosed this was a great shock to me and my wife. As for me, I was in denial and very upset and immediately demanded a second opinion. I was even upset at the teacher who noticed there was something wrong with him. But only later did I realize how thankful I was for the teacher being aware that Joey had an issue and needed to be checked.
Imagine knowing your child was already half way through their life at age 12, and possibly even towards the end of their life. What would you do? Would you work long hours or even look for a second job and spend valuable time commuting there and back? Would you miss out on those important years in your child’s life whilst he is still able to walk? Still able to use his hands? We’ve been asked why his mother doesn’t work. The truth is, she does. Since Joey has been diagnosed she works hard every day she hopes will eventually bloom and flourish, she can work around the needs and demands of her son. You see, since being stationed here at Fort Lewis three years ago, Joey has been walking. As time went on, it has become more demanding, and as of this year, he has stopped walking, standing, and has requested help moving from the shower and toilet. This is as good as it will get, and this is as good as we will ever see it again. Duchenne is progressive and degenerative. That means he gets weaker, day by day. Each day, he needs more and more help, more support. He tires when he writes, walks, eats, and even just sitting where his feet become numb due to lost circulation. Eventually, he won’t be able to do any more of that himself. Eventually, he will be too weak to even lift his hand. So for my wife to have a “normal” job is not possible. We don’t have family who we can rely on to help us. It’s just us.
Some may think that schools provide holiday care programs for kids whose parents work. Unfortunately, no matter the amount of instructions we try to give, no one can ever understand all the complex care Joey requires. Not everyone will look at the ground, to see if it’s level. Or help him in and out of a car or a seat or his wheelchair. Not everyone knows to watch him when he eats, as he is a choking risk. Not everyone knows how to give him his medicine, which needs to be taken every day. The only people who truly understand what looking after him entails are us, his mother and father. And there is no way in the world that we will put his life at risk by allowing someone else to take on that responsibility.
Life as a family is hard. We can’t take our kids on spontaneous walks on the beach, spend a day in the surf, go snow skiing, hiking, or bike riding. Because if we can’t do it together, then we don’t do it at all. Joey is excluded from many school excursions and is left out of soccer and football games only to sit on the sidelines and watch with a look of sadness on his face. He plays on his iPad and Xbox by himself and hoping his friends are online to play with him. He hates not being like the other kids and being “the odd one out” or “special”. We attempt to go out either to eat or just for a weekend and he turned to us and said “No, it’s not for me and I am tired”. He wants to be included. He wants to fit in. And most of the time that’s not possible. And not the other 3 kids at the house, who miss out on so much as well.
As I had stated earlier, Joey has transitioned from walking to coming off his feet for good. This is a difficult time. His meltdowns are frequent, his frustration abounds, and his sadness is always present. Imagine being 12 years old and probably never going on a sleepover, or going on a school camp unless mom or dad can come along. It makes our heart hurt, just thinking about it. Knowing he will never be able to do those things. Imagine KNOWING that your child is going to die, but first their bodies will completely waste away while they are still fully aware of their surroundings.
In our life, we have to research and thoroughly review any place we stay or eat at, as it has to be wheelchair friendly. That sort of accommodation always cost more. And a wheelchair-accessible vehicle is prohibitively expensive. Unless family come to us, we won’t see much of them as most homes are not wheelchair accessible. And then we have the issue of toileting in public. Usually there is only one disabled toilet, and it’s often used by able-bodied people who find a usual toilets an inconvenience. The way I see it, you take the good with the bad. We would happily park miles away or pay full price if it meant my son no longer had Duchenne. But he does. And that isn’t going to change. Although our many Facebook posts show a family living a great life, the truth is that we only allow you to see what we want you to see. The reality is, we cry every night. And have done so every night since he was diagnosed.
We don’t know how many more years he has, since this progression from walking to now wheelchair bound happened in the three years we had been here. We strive to look for cures but he always falls short for any new medications which are coming out as he doesn’t meet the criteria.
We are not an ordinary family. We are an extraordinary family, trying to give an extraordinary boy an extraordinary life. We need help in raising funds for a wheelchair van for transport. A new one costs $68,000 dollars. Joey’s progression has caused us to fall short on this goal due to the constant care and attention that has been required. Help in raising these funds would aid us tremendously in protecting his new electric wheelchair from the elements and keeping our family happy and together.
CR Impact Points
Click the VOTE button to give Joel 100 CrowdRise Impact Points (CIPs). Vote for the Volunteers and Fundraisers that are answering the call to service, raising money for charity, and making an impact for their causes. Come back and Vote every months. CIPs can earn you the highly coveted, highly respected CrowdRise Royalty Status.
CR Impact Points
If you're seeing the grey VOTE button, you should feel great about yourself. It means you already voted for Joel this month. Come back next month and vote again if you still love Joel. Thanks to your vote, Joel earned 100 CrowdRise Impact Points (CIPs). CIPs can earn you the highly coveted, highly respected CrowdRise Royalty Status.