Hi everyone! I know that this may sound crazy, but it is all true!!
I want to give eveyone a back ground of the WHOLE STORY!!!
Rob and I got married in 2009 and wanted to start our family right away. We were blessed with our oldest son Kylar 33 weeks later and yes he was born 7 weeks premature. He spent 39 days in the Neonatal Intentive Care Unit in York Hospital. Five short days later he passed away 13 times before he was transferred to the Pediatric Intensive Care Unit at Hershey Childrens Hospital. They discovered that he was aspirating his milk to his lungs. No one could figure out what was wrong with him. Finally after two vey long years the doctors fnally discovered that Kylar does not make cholesterol in his body and has a very rare condition called Smith-Lemli-Optiz Syndrome.
We decided that Kylar would need a sibling even though he has this condition. We wanted them far enough apart, but not to far, they are 3 years apart in age. A short time later I got pregnant and 17 weeks into my pregnancy we found out that our second child had the same condition as Kylar. I had a very hard pregnacy as near the end of my pregnancy I didn't have any fluid left around the baby. The doctors decided that Dakota must be born early. Dakota was born at 36 +5 days. He spent 5 days in the Neonatal Intentive Care Unit in York Hospital before being life lioned to Neonatal Intentive Care Unit Hershey Childrens Hospital, because he had aspirated his milk to his nasal passage and cause the passage to swell shut. Dakota had his first surgery at 6 days old for a Gtube and a Nissen placed for feeding reasons. We spent a total 8 days then at Hershey Childrens Hospital. Dakota has been pretty health except for a week long hospital stay in Hershey back in November for uncontrolable vomiting. On May 14, 2014 Dakota had his second surgery hypospadias and chordee repair. A simple surgery, well of course it was not for him, Dakota lost a lot of blood and had to have a blood transfussion and a fresh frozen plasma transfusion. He seemed to be doing well until the doctors discovered that a fistula had formed and realized that the whole surgery was a complete failure. Now this November 11th Dakota will be having his third surgery to start the buccal transplant to hopefully fix what did not work in May. From what I am understanding they will be taking part of his cheek and transplanting it to the penis. The doctors have told us that there is a chance that his body will reject his own skin. We are praying that his body will not reject and he will have a successful sugery.
Now since December 4th Rob has been having seizures and can't get them undercontrol. He gets them some what undercontrol and then he has another one at work and they have to call 911 for the ambulance. Here it is June and Rob's doctors have suggesed to him to take some time off of work to get his seizures under control fully. Now to add more Rob has just been diagnosed as having bipolar. Well I work 20 hours a week at the hospital and try everything I can think of to make money, whether it is apps on my phone, yard sales, selling stuff, couponing, you name it, but we are still stuggling beyond limits.
The way that they money will be used to help keep a roof over our childrens heads, electric on to help keep all of their medical equipment running, getting back and forth to doctor appointment and a small portion will be used for Rob and I to get lunches at the hospitals while we are inpatients with Dakota. Please help as we have 2 special needs children and now with Rob disability I just don't know what we are going to be able to do for our children. Our pride is completely gone. So many people have funraisers for wedding and to help with pets expenses I am just hoping and praying that someone will find it in their hearts to help us!!
Thanks in advance
Rob, Melody, Kylar and Dakota
- American Legion
- American Legion
- Nicole Shafer
- roxana summers
- Carri Armstrong
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