Axel's Fight Against Sturge Weber

$11,795 of $5,000 goal

Raised by 178 people in 36 months
Jillian Hillman
on behalf of Patricia Magane
 LUNENBURG, MA
Tricia and Justen were two parents who had struggled with infertility since trying to get pregnant with their first child Colton. Their story began on August 4, 2014. Tricia & Justen welcomed twin sons Axel and Bode Levasseur. No one could have been happier than these two parents that struggled with several miscarriages while trying to expand their family. After rounds of IVF in hopes to give Colton a sibling they were blessed to find out that they would be welcoming two new additions to their family. They were ecstatic as they knew Colton would not have just one sibling but two! They prepared to welcome their new additions, and as in any pregnancy they found out that they would be having twin boys! Three boys what’s a mother to do! Tricia went through her pregnancy like a super hero carrying the boys to full term. The twins arrived, and their dream family was now complete.

Soon after the arrival of Axel one of the many pediatricians in the operating room rushed to Tricia’s bedside and told her and Justen that their son had a birth mark on his face, and that could mean he may have a serious problem with his brain. They both took the news in stride and carried on welcoming their two new boys into the world. Doctor after doctor examined him and assured Tricia and Justen that Axel would not be in the small percentage of children who are affected. Their happy new baby continued to grow and progress as any other baby would. Axel had an MRI done in December 2014 to be absolutely certain he did not have any issues related to his birth mark on his face. The results that came back were not what they were expecting.

Tricia and Justen would learn that their son Axel was diagnosed with Sturge Weber Syndrome. One of the complications of this rare disease is the numerous amounts of seizures that can leave lesions on the brain. Axel’s neurologist specializes in this rare condition, and they were told that their beautiful baby boy’s MRI showed a severe case and to expect the seizures at any time. As time progressed Tricia and Justen noticed other symptoms of Sturge Weber affecting Axel, they all went about their days as normal as possible and enjoyed their now complete family.

It was February 2015 when Axel would begin the long battle with Sturge Weber. He had his first seizure that would eventually lead to more and on a more frequent basis. Tricia & Justen took Axel to Boston Childrens hospital where some of the best doctors in the country specialize in this disease. After months and months of hospital trips and doctors appointments they found themselves back in Boston for an extended amount of time. June 2015 Axel had a seizure that lasted 29 minutes long and stopped his breathing. His team of neurologists have exhausted all options for treating the seizures with medications, as his seizures were now occurring in his sleep and life threatening

With the seizures becoming worse and the neurologists opting to stop medications the next step in Axel’s journey is surgery which is scheduled for July 22, 2015. Axel will undergo a hemispherectomy which is a very rare surgical procedure where one cerebal hemisphere (half of the brain) is removed or disabled. This will be a long road to a full recovery for Axel and his family.

Axel has brought so much joy to his family, his smile is infectious, and he lights up a room with his laughter. It is our turn to light up Axel’s world. This fund is set up to help with the medical costs, travel, family expenses, and the physical and occupational therapy that he will endure after his surgery. Axel and his family have blessed so many people now it’s our turn to bless them. To learn more about Sturge Weber Syndrome please visit www.sturge-weber.org  Thank You In Advanced For All Of Your Support!
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Look for my article today in The Telegram. Thanks Again and hope everyone has a great Labor Day! Love, Axel
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Axel was able to leave Boston Children's Hospital Friday and is home resting &recovering with his family. It is with great pride that I was able to present this check to them as a family! When I initially started this go fund me page I never anticipated the amount of support that would be recieved. I would like to THANK everyone who generously donated to Axel's Fight Against Sturge Weber, without people like you this would of never been able to happen. Axel and his family are beyond grateful for all of the love and support. Thanks Again!
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"Every cloud has a silver lining, and every rainbow needs a little bit of rain" Axel was able to finally leave ICU Friday and is resting and recovering comfortably on the 9th floor with his family. Thank You For All Of The Support!
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Wednesday July 29: UPDATE
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Read a Previous Update
Ed Krzesinski
35 months ago
3
3

Came across your story and our friends son had the same surgery with success.hoping and praying the same for your beautiful son.god bless him.

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Jillian Hillman
36 months ago
3
3

I am hoping this page will see many eyes in the next few weeks before Axel ' s surgery! Please share and remember all donations are greatly appreciated!

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Anita Arsenault Collins
35 months ago

Prayers heading to Axel. Thoughts and prayers heading to all of his family.

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$11,795 of $5,000 goal

Raised by 178 people in 36 months
Created July 3, 2015
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$25
Anonymous
33 months ago
JC
$50
JUNE CAMBER
33 months ago

JUSTIN & PATRICIA HOPE THIS HELPS. TAKE CARE, BUKKAS MOM

$50
Ginette Busack
33 months ago

Wishing the best for your baby boy.

$20
Anonymous
33 months ago
$50
Anonymous
33 months ago (Monthly Donation)
ML
$25
Margie Lattini
34 months ago

Thinking of you and your family and hoping Axel grows stronger each day.

Ed Krzesinski
35 months ago
3
3

Came across your story and our friends son had the same surgery with success.hoping and praying the same for your beautiful son.god bless him.

+ Read More
Jillian Hillman
36 months ago
3
3

I am hoping this page will see many eyes in the next few weeks before Axel ' s surgery! Please share and remember all donations are greatly appreciated!

+ Read More
Anita Arsenault Collins
35 months ago

Prayers heading to Axel. Thoughts and prayers heading to all of his family.

+ Read More
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