TeamNelson Our Medical Journey
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Everyone wonders why now do we have a gofundme account now, well it took us awhile to get to this point. Both my boys Ricky who is 24 and Kenny who is 20, have Hunter syndrome also known as MPS II. Kenny recently gained is Angel wings on September 17th, 2021, he will forever be 20. Our hearts are so broken......Then in 2022 Brent, Daddy to Ricky and Kenny was diagnosed with Pancreatic cancer. Update Brent took his final breath on June 20, 2024 and is now with Kenny.
For a while we were ok their insurances covered pretty much everything. As the boys got older they started needing other things such as suction machines, wheelchairs, braces and other medical equipment. Diaper necessities are not covered and we don't qualify for any other assistance because my husband chooses to have a good job that has a good insurance. I cannot work outside of the home because I have to take care of the boys. As the years have gone on more and more things are having to be bought out of pocket. We spend close to $700 each month out of pocket for things such as wipes, supplements, prescriptions, medical supplies and equipment. We have had supplies and equipment stolen from us which we had to come out of pocket for. Going to appointments usually require overnight stays which again require out of pocket expenses. When the boys are in the hospital that is another out of pocket expense one reason they never carry Rickys size in diapers and the other the parents trays are not covered so that can very expensive fast. So like I said it took us a long time to get where we are at, almost 14years, but here we are. Please any amount would greatly be appreciated!! Thank you again! Here is a brief decription of Hunter Syndrome and a bit of a back story on Ricky and Kenny: Hunter syndrome is a mucopolysaccharide storage disorder that compromises a wide spectrum of severity of individuals with hunters. A deficiency of the enzyme iduronate sulfate results in the accumulation of glycosaminoglycans or GAGs, which is responsible for numerous problems such as joint stiffness enlarged liver and spleen, enlarged head, short neck and stature delayed disability heart problems respiratory problems and many other complications. Kenny was the first diagnosed In February of 2006 While he was in the PICU For Hemalitic anemia. We were already in shock from what was already going on with him and being that a few months prior Brents aunt had told us, after days of research that it could be Hunter syndrome because we had already thought that someting was wrong with the boys because of all of the ear infections delayed speech and walking on their tip toes, clawed hands ,and the pebbled like rash on there backs. But other than her, know one else in family had heard of it, it really scared us but then the doctors turned around and said that Ricky probably had it too and wanted to test him right away, so we did and he came back possitive also in March 2006. So I started on the band wagon trying to find out everything I could about MPS II. In the mean time Kenny was still in PICU he ended up going into cardiac arrest in January and ended up with an anoxic brain injury and was still on the ventilator and ended up having to have a g-tube so he could get nutrition and a trach put in to help him breath. In March we ended up having to put him in a pediatric rehab facility to help take care of all of his medical needs that could not be done from home it literally broke my heart to have him so far away because it was an 1 1/2 hours away but I was there every other day and Ricky came with me because he really missed his brother. But after they had weened him of the ventilator in June and started getting him off of his meds we started preparing to bring him home. So September 1st he finally came home and well while all of this was going on we were also waiting for the FDA approval of a new drug for hunters syndrome. It was finally approved in July of 2006 so we had to get all the approvals done to get Ricky started And on September 15th Ricky had his first infusion.YEAH!! We had waited awhile on Kenny to start because of all of the trauma that his little body had been through. Because of the brain injury Kenny has been having to learn how to do everything all over again. Kenny finally started his infusions January 2007. The boys are doing good alot of changes from the infusion( liver counts are down, stomachs are smaller, stamina has increased, facial features are changing hair and skin is softer) lots and lot of changes. Ricky has received a feeding tube because he was not gaining any weight, but after the gtube is now finally gaining weight. Kenny also had to have a feeding tube put back in for supplemental purposes because of him having so many seizures it was hard getting his medicine in him on time. Both boys see a total of 8 different specialist at least twice a year. They both have fragile immune systems. We don't qualify for much for them so any little amount will greatly be appreciated. Alot of they're needs we pay for out of pocket like certain medical equipment, medications, vitamins, supplements, diaper needs, creams, going to and from doctor appointments and such and our many hospital stays. Daddy to Ricky and Angel Kenny was recently diagnosed with Pancreatic cancer and so we decided to add his medical journey with the boys. As they are both fighting huge battles. Please keep them in your prayers.
For a while we were ok their insurances covered pretty much everything. As the boys got older they started needing other things such as suction machines, wheelchairs, braces and other medical equipment. Diaper necessities are not covered and we don't qualify for any other assistance because my husband chooses to have a good job that has a good insurance. I cannot work outside of the home because I have to take care of the boys. As the years have gone on more and more things are having to be bought out of pocket. We spend close to $700 each month out of pocket for things such as wipes, supplements, prescriptions, medical supplies and equipment. We have had supplies and equipment stolen from us which we had to come out of pocket for. Going to appointments usually require overnight stays which again require out of pocket expenses. When the boys are in the hospital that is another out of pocket expense one reason they never carry Rickys size in diapers and the other the parents trays are not covered so that can very expensive fast. So like I said it took us a long time to get where we are at, almost 14years, but here we are. Please any amount would greatly be appreciated!! Thank you again! Here is a brief decription of Hunter Syndrome and a bit of a back story on Ricky and Kenny: Hunter syndrome is a mucopolysaccharide storage disorder that compromises a wide spectrum of severity of individuals with hunters. A deficiency of the enzyme iduronate sulfate results in the accumulation of glycosaminoglycans or GAGs, which is responsible for numerous problems such as joint stiffness enlarged liver and spleen, enlarged head, short neck and stature delayed disability heart problems respiratory problems and many other complications. Kenny was the first diagnosed In February of 2006 While he was in the PICU For Hemalitic anemia. We were already in shock from what was already going on with him and being that a few months prior Brents aunt had told us, after days of research that it could be Hunter syndrome because we had already thought that someting was wrong with the boys because of all of the ear infections delayed speech and walking on their tip toes, clawed hands ,and the pebbled like rash on there backs. But other than her, know one else in family had heard of it, it really scared us but then the doctors turned around and said that Ricky probably had it too and wanted to test him right away, so we did and he came back possitive also in March 2006. So I started on the band wagon trying to find out everything I could about MPS II. In the mean time Kenny was still in PICU he ended up going into cardiac arrest in January and ended up with an anoxic brain injury and was still on the ventilator and ended up having to have a g-tube so he could get nutrition and a trach put in to help him breath. In March we ended up having to put him in a pediatric rehab facility to help take care of all of his medical needs that could not be done from home it literally broke my heart to have him so far away because it was an 1 1/2 hours away but I was there every other day and Ricky came with me because he really missed his brother. But after they had weened him of the ventilator in June and started getting him off of his meds we started preparing to bring him home. So September 1st he finally came home and well while all of this was going on we were also waiting for the FDA approval of a new drug for hunters syndrome. It was finally approved in July of 2006 so we had to get all the approvals done to get Ricky started And on September 15th Ricky had his first infusion.YEAH!! We had waited awhile on Kenny to start because of all of the trauma that his little body had been through. Because of the brain injury Kenny has been having to learn how to do everything all over again. Kenny finally started his infusions January 2007. The boys are doing good alot of changes from the infusion( liver counts are down, stomachs are smaller, stamina has increased, facial features are changing hair and skin is softer) lots and lot of changes. Ricky has received a feeding tube because he was not gaining any weight, but after the gtube is now finally gaining weight. Kenny also had to have a feeding tube put back in for supplemental purposes because of him having so many seizures it was hard getting his medicine in him on time. Both boys see a total of 8 different specialist at least twice a year. They both have fragile immune systems. We don't qualify for much for them so any little amount will greatly be appreciated. Alot of they're needs we pay for out of pocket like certain medical equipment, medications, vitamins, supplements, diaper needs, creams, going to and from doctor appointments and such and our many hospital stays. Daddy to Ricky and Angel Kenny was recently diagnosed with Pancreatic cancer and so we decided to add his medical journey with the boys. As they are both fighting huge battles. Please keep them in your prayers.
Organizer
Deon Nelson
Organizer
Lawton, OK