James Alec Levy Brain Surgery Fundraiser
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James Alec Levy was born May 22nd 2015. Shortly after he was born we learned that he had a medical condition called hemophilia A. Hemophilia is when your blood does not clot properly which can lead to spontaneous joint bleeds as well as serious issues when he is injured. As soon as we were aware we did not let it get us down. We talked with doctors and learned about his condition as well as what we needed to do to help him.
For the most part, he was a regular bouncy boy who loved to hang out with his big sister Oleanna, snuggle with his mom, Meghan, and play with his dad, Max. When he was about one year old we made the decision to have a medical port put in because it was necessary to give him his medication.
At this point we were giving him his medication three times a week. This became more and more difficult over the years as he became bigger and stronger. Luckily, in the beginning of 2019 we were introduced to a new medication that only needed to be administered once a month. Things were looking up for not only Jimmy but for us too.
Unfortunately, the good news of this new medication did not last long. While he was in the bathroom he fell and bumped his head. Due to his hemophilia we had to take him to the ER to make sure there was no internal bleeding. After a CT scan the doctor noticed an abnormality in his brain. We went to see a specialist and were told that he has a brain tumor called a craniopharyngioma resting on his pituitary. Due to its location and the fact that it will continue to grow it must be removed as soon as possible.
When I first found out about this horrible news I was flooded with emotion. At first I was angry. Then I was in tears worrying about what was going to happen to him and how this would negatively affect our whole family. Jimmy has been through so much in his life already and it’s hard for me to grasp how fate can sometimes be so cruel. I tried to focus on the positive things like that we found the tumor early and that we have a phenomenal team of surgeons. After all this emotion, I decided the best thing to do was to move forward as best as I could, spend time with Jimmy and the rest of my family, stay as positive as possible and make the best of a horrible situation.
We have met with multiple neurosurgeons, ear, nose, and throat doctors, and his hemophilia doctor to discuss a plan of action that would be the best for Jimmy. Right now nothing is confirmed as all the doctors are still discussing what will be the best route to remove the tumor. The surgeons believe the best way to approach the tumor is through the nasal cavity. If they approach this way the surgery will take approximately 10 hours.
The best case scenario is that they remove the whole tumor leaving some of his pituitary intact. He will still have to take supplemental hormones for the rest of his life no matter what but that is a small price to pay for a successful surgery.
During this time we are trying to do everything we can to raise money for the cost of the surgery and other medical bills. Anything helps please like and share so we can get the word out to as many people as possible.
Thank you so very much,
The Levy family
For the most part, he was a regular bouncy boy who loved to hang out with his big sister Oleanna, snuggle with his mom, Meghan, and play with his dad, Max. When he was about one year old we made the decision to have a medical port put in because it was necessary to give him his medication.
At this point we were giving him his medication three times a week. This became more and more difficult over the years as he became bigger and stronger. Luckily, in the beginning of 2019 we were introduced to a new medication that only needed to be administered once a month. Things were looking up for not only Jimmy but for us too.
Unfortunately, the good news of this new medication did not last long. While he was in the bathroom he fell and bumped his head. Due to his hemophilia we had to take him to the ER to make sure there was no internal bleeding. After a CT scan the doctor noticed an abnormality in his brain. We went to see a specialist and were told that he has a brain tumor called a craniopharyngioma resting on his pituitary. Due to its location and the fact that it will continue to grow it must be removed as soon as possible.
When I first found out about this horrible news I was flooded with emotion. At first I was angry. Then I was in tears worrying about what was going to happen to him and how this would negatively affect our whole family. Jimmy has been through so much in his life already and it’s hard for me to grasp how fate can sometimes be so cruel. I tried to focus on the positive things like that we found the tumor early and that we have a phenomenal team of surgeons. After all this emotion, I decided the best thing to do was to move forward as best as I could, spend time with Jimmy and the rest of my family, stay as positive as possible and make the best of a horrible situation.
We have met with multiple neurosurgeons, ear, nose, and throat doctors, and his hemophilia doctor to discuss a plan of action that would be the best for Jimmy. Right now nothing is confirmed as all the doctors are still discussing what will be the best route to remove the tumor. The surgeons believe the best way to approach the tumor is through the nasal cavity. If they approach this way the surgery will take approximately 10 hours.
The best case scenario is that they remove the whole tumor leaving some of his pituitary intact. He will still have to take supplemental hormones for the rest of his life no matter what but that is a small price to pay for a successful surgery.
During this time we are trying to do everything we can to raise money for the cost of the surgery and other medical bills. Anything helps please like and share so we can get the word out to as many people as possible.
Thank you so very much,
The Levy family
Fundraising team (4)
Max Levy
Organizer
Meridian, ID
Cheryl McDonald
Team member
Meghan Levy
Team member
Oleanna Levy
Team member