Rx774
Mouseketeer
- Joined
- May 16, 2012
Forgive my ignorance. I introduced ourselves to the Welcome Board, but not to you guys officially...
Ok where do we start our Make A Wish Trip(s) are unique.
Allow me to explain. We are the proud parents of not only 1, but 2 children eligible for Make A Wish. Both our daughter Annika (age 10) and son Christian ( age 6) were born with MSUD (Maple Syrup Urine Disease), a rare metabolic disorder that prevents the body from breaking down protein properly. I know, we never heard of this condition before either. Annika was diagnosed at day 5 because of the newborn screen. Her pediatrician called us and asked us strange questions. How is Annika doing? Do you smell Maple Syrup around her diaper? By this time, her room REAKED of it, but as new parents, we thought it was a byproduct smell of the diaper. We were told to rush her to Childrens Hospital of Philadelphia, where she spent the following 2 weeks in the NICU. Her brain had swollen, due to the amino acids her body not be able to metabolize, becoming toxic in her brain. She was coma like for days, but every day, she got better and better as those harmful levels dropped. If it was as simple as having a low protein diet, this disease wouldnt be that bad, but other stimuli could set this condition off. Colds, stress, even something as simple as not eating enough prior to bed, could disrupt her. The initial stages were slowed speech, and the inability of your child to hold themselves up right. Think V8 commercials.
Our son Christian went through a similar phase. Diagnosis, treatment and release. Both kids would have their bouts in the hospital, which would usually last a few days at a time. One day, we had them in the hospital, at the same time. Down the hall from one another. We learned about the transplant option when Annika was about 6, but we decided that endeavor was just too much. Then 1 day Christian, had a really bad episode while in the hospital, and have seizure really badly. My husband, who was spending the night with him told me that the doctors were running in at out frantically, and Christian had his eyes wide open but nobody was home. He was in a coma, and we knew what the next phase was. Luckily he recovered fully. And that was the last straw for us. We decided, why have this over our their heads forever. We elected to get a transplant for both kids. It was discovered that Annika had a hole in her heart when they examined her body for transplant ready. So she had to have it surgically prepared. Our poor child was going through so much. Eventually they were both able to receive liver transplants, which didnt cure them on a genetic level, but alleviated all the negative aspects of MSUD.
So here we are, years later, just finding out about MAW. My husband has referred them, and the MAW team has answered our call. MAW called yesterday to schedule an appointment to see us soon. Our son wants to go to Universal Studios in California. We are hoping they include a pass to Disney while out there. Our daughter wants to do a Disney Cruise. We wouldnt push for both in 1 year, Im a SAHM, but my husband has already used some vaca time for when we visited his mom in Florida. Thanks My name is Shana. My husband's name is Robert btw. for taking the time to read all of this.
Ok where do we start our Make A Wish Trip(s) are unique.
Allow me to explain. We are the proud parents of not only 1, but 2 children eligible for Make A Wish. Both our daughter Annika (age 10) and son Christian ( age 6) were born with MSUD (Maple Syrup Urine Disease), a rare metabolic disorder that prevents the body from breaking down protein properly. I know, we never heard of this condition before either. Annika was diagnosed at day 5 because of the newborn screen. Her pediatrician called us and asked us strange questions. How is Annika doing? Do you smell Maple Syrup around her diaper? By this time, her room REAKED of it, but as new parents, we thought it was a byproduct smell of the diaper. We were told to rush her to Childrens Hospital of Philadelphia, where she spent the following 2 weeks in the NICU. Her brain had swollen, due to the amino acids her body not be able to metabolize, becoming toxic in her brain. She was coma like for days, but every day, she got better and better as those harmful levels dropped. If it was as simple as having a low protein diet, this disease wouldnt be that bad, but other stimuli could set this condition off. Colds, stress, even something as simple as not eating enough prior to bed, could disrupt her. The initial stages were slowed speech, and the inability of your child to hold themselves up right. Think V8 commercials.
Our son Christian went through a similar phase. Diagnosis, treatment and release. Both kids would have their bouts in the hospital, which would usually last a few days at a time. One day, we had them in the hospital, at the same time. Down the hall from one another. We learned about the transplant option when Annika was about 6, but we decided that endeavor was just too much. Then 1 day Christian, had a really bad episode while in the hospital, and have seizure really badly. My husband, who was spending the night with him told me that the doctors were running in at out frantically, and Christian had his eyes wide open but nobody was home. He was in a coma, and we knew what the next phase was. Luckily he recovered fully. And that was the last straw for us. We decided, why have this over our their heads forever. We elected to get a transplant for both kids. It was discovered that Annika had a hole in her heart when they examined her body for transplant ready. So she had to have it surgically prepared. Our poor child was going through so much. Eventually they were both able to receive liver transplants, which didnt cure them on a genetic level, but alleviated all the negative aspects of MSUD.
So here we are, years later, just finding out about MAW. My husband has referred them, and the MAW team has answered our call. MAW called yesterday to schedule an appointment to see us soon. Our son wants to go to Universal Studios in California. We are hoping they include a pass to Disney while out there. Our daughter wants to do a Disney Cruise. We wouldnt push for both in 1 year, Im a SAHM, but my husband has already used some vaca time for when we visited his mom in Florida. Thanks My name is Shana. My husband's name is Robert btw. for taking the time to read all of this.
) and his flight to Orlando.
Everyone's input would be VERY helpful
so thanks in advance.
We are traveling in about five months, so plenty of time to get everything organized! I was wondering if Maroo is still on this board, or if anyone else has a spread sheet similar to hers? I read on quite a few PTRs that it was a helpful planning tool
