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Emmett and I need your help during this difficult time! We’ve been admitted into the hospital since November 19th and we still have a few months ahead of us.
A little back story : Emmett was late diagnosed in June 2024 with MPS-1, Hurler Syndrome, a rare genetic lysosomal storage disease. For those who don’t know, it is rare, progressive and terminal. Unfortunately, since we didn’t catch this disease in time he isn’t promised a full life like every mama hopes for her kids. Emmett maybe has his teenage years but that’s about it. Kids with MPS-1, typically don’t last very long especially untreated. So, I’ve made it my mission to exhausted every resource I can to get him more time.
He is missing an enzyme in his body that helps break down waste. Without that enzyme, waste is just building up in his body and attacking his brain, organs, tissues, essentially everything.. His condition has gotten worse with age which has landed him in the hospital in the PICU on support struggling to breathe on his own.
They failed to extubate him a few times because of his difficult airway which after several meetings with the doctors, nurses and specialists we finally did the tracheostomy procedure so we’re praying that he is able to breathe much better now and it helps his OSA so he doesn’t stop breathing while sleeping again.
Emmett also has an excessive amount of fluid in his head that causes pressure on his brain and optical nerve. While in the PICU, he had his procedure for the VP shunt so we’re praying that will help relieve the pressure on his brain and optical nerve so he can live a little more comfortably for what years he does have left.
Being hospitalized, we thought we were only coming here for a port placement and a shunt then go home after a few weeks but it’s turned into months. We’ve found out that sweet little Emmett has it much worse than we thought. And, It has been extremely hard being here watching him go through all of this. He’s been through so many procedures and the labs never stop. He just has so much on his plate and can’t seem to catch a break.
I’m the main provider for my family so being in the hospital by my son’s side I lost my job because it’s been months since I’ve worked. Sadly, Emmett doesn’t tolerate anyone but me by his side because he’s a big mommy’s boy and doesn’t understand what’s going on so I haven’t been able to leave his side to return to work. It’s been extremely stressful. I’ve been using what funds I had left to make ends meet but it’s become incredibly hard to catch up on household expenses to make sure we still have a home to return to after all of this. I’m just a struggling mama stretched thin and can’t get ahead on any of the bills. That’s why I’m seeking help. I truly don’t like asking for help because I’ve always handled things on my own but when you’re in a tough situation like I am and you have no way of keeping a roof over your other kids’ heads and keeping the bills paid while also caring for your sick child in the hospital, sometimes you have to do what you don’t want to just to keep your head above water. It’s sad and I hope I don’t have to go through this again in the future because this has been the hardest time me and my family has ever faced.
Please keep us in your prayers and please share his GoFundMe so his story can be passed along to touch everyone’s hearts in hopes to reach those who could help us! I don’t want anyone to fell excepted to help, prayers have done more than enough for us and that’s all I hope for. Emmett’s making a little progress, baby steps at a time. Which is good, progress is progress but I have no idea how long he’ll need to recover before he can go home.
A little back story : Emmett was late diagnosed in June 2024 with MPS-1, Hurler Syndrome, a rare genetic lysosomal storage disease. For those who don’t know, it is rare, progressive and terminal. Unfortunately, since we didn’t catch this disease in time he isn’t promised a full life like every mama hopes for her kids. Emmett maybe has his teenage years but that’s about it. Kids with MPS-1, typically don’t last very long especially untreated. So, I’ve made it my mission to exhausted every resource I can to get him more time.
He is missing an enzyme in his body that helps break down waste. Without that enzyme, waste is just building up in his body and attacking his brain, organs, tissues, essentially everything.. His condition has gotten worse with age which has landed him in the hospital in the PICU on support struggling to breathe on his own.
They failed to extubate him a few times because of his difficult airway which after several meetings with the doctors, nurses and specialists we finally did the tracheostomy procedure so we’re praying that he is able to breathe much better now and it helps his OSA so he doesn’t stop breathing while sleeping again.
Emmett also has an excessive amount of fluid in his head that causes pressure on his brain and optical nerve. While in the PICU, he had his procedure for the VP shunt so we’re praying that will help relieve the pressure on his brain and optical nerve so he can live a little more comfortably for what years he does have left.
Being hospitalized, we thought we were only coming here for a port placement and a shunt then go home after a few weeks but it’s turned into months. We’ve found out that sweet little Emmett has it much worse than we thought. And, It has been extremely hard being here watching him go through all of this. He’s been through so many procedures and the labs never stop. He just has so much on his plate and can’t seem to catch a break.
I’m the main provider for my family so being in the hospital by my son’s side I lost my job because it’s been months since I’ve worked. Sadly, Emmett doesn’t tolerate anyone but me by his side because he’s a big mommy’s boy and doesn’t understand what’s going on so I haven’t been able to leave his side to return to work. It’s been extremely stressful. I’ve been using what funds I had left to make ends meet but it’s become incredibly hard to catch up on household expenses to make sure we still have a home to return to after all of this. I’m just a struggling mama stretched thin and can’t get ahead on any of the bills. That’s why I’m seeking help. I truly don’t like asking for help because I’ve always handled things on my own but when you’re in a tough situation like I am and you have no way of keeping a roof over your other kids’ heads and keeping the bills paid while also caring for your sick child in the hospital, sometimes you have to do what you don’t want to just to keep your head above water. It’s sad and I hope I don’t have to go through this again in the future because this has been the hardest time me and my family has ever faced.
Please keep us in your prayers and please share his GoFundMe so his story can be passed along to touch everyone’s hearts in hopes to reach those who could help us! I don’t want anyone to fell excepted to help, prayers have done more than enough for us and that’s all I hope for. Emmett’s making a little progress, baby steps at a time. Which is good, progress is progress but I have no idea how long he’ll need to recover before he can go home.
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