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Benjamin's MPS1 Journey

$44,089 of $45,000 goal

Raised by 539 people in 7 months
Created July 16, 2017
On June 19, 2017  my nephew, Benjamin, was diagnosed with MPS I, a rare genetic disorder previously known as Hurlers Disease. Mucopolysaccharidosis I (MPS I) affects many body systems and that leads to organ damage. It is caused by a mutation in the gene that makes an enzyme called alpha-L-iduronidase.  Because of this defect, cells either produce the enzyme in low amounts or cannot produce it at all. The enzyme is needed to break down substances called “glycosaminoglycans” (GAGs), which are by-products of chemical reactions in the body’s cells. If GAGs are not broken down, they build up in the cell, eventually leading to cell, tissue, and organ damage . There are many symptoms that drastically affect Benji's daily life due to his diagnosis. His family has looked into all resources to give him the most productive and fulfilling life. 

Benji has been to many specialists and doctors since his diagnosis and starting July 12, 2017 began receiving weekly Enzyme Replacement Threapy (ERT) at the hospital. He has been through blood tests, sleep studies, and numerous specialty exams.  The next steps of his journey include: moving to The Children's Hospital of Philadelphia (CHOP), receiving two weeks of chemothreapy, a bone marrow transplant and spending up to 5 months in the Philadelphia area. After he is cleared to move back home from CHOP,  he can start outpatient ERT treatment weekly at Hackensack Hospital. He is already taking part in early intervention and will receive all therapies needed to help him function at his highest achievable level. 

His parents, Jason and Tamara will be relocating to Philadelphia for as long as Benji needs to be at CHOP. They will take turns taking paid and unpaid leave time from their jobs as well as receiving any support they can from our family. Unfortunately, the bills are quickly adding up. These expenses include: transportation to and from Philly weekly, co-pays for specialists, hospital visits and primary care doctors, medical bills,  long term lodging, food and also making sure their youngest son, Tyler, is taken care of. 

Any support from family and friends is greatly appreciated. The goal above is an estimated calculation of all expenses predictable over the next year period.  Jason and Tamara made it very clear that if any money donated was not used during this 1 year journey for Benji, all funds would be donated to The MPS Society. 

For more information on MPS I, please click on the web address below: 
http://mpssociety.org/mps/mps-i/
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Today is Benji’s 2nd Birthday!

I wanted to share an update with you all as its been a while. Benji remains at home and is doing very well. He continues to go to Philadelphia for certain treatments weekly/bi-weekly and gets different modalities of therapy at home. The doctors are continuing to decrease some of his medications as able which is absolutely fantastic. He is acting just like a two year old, learning a lot, using sign language to communicate and becoming a picky eater. He continues to smile most of his day, scream with joy and light up a room with his laugh.

He is 174 days post transplant today and we are happy he is doing so well.


-Be Brave Little One-
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Tyler and his parents asked Santa for one thing this year. They wanted to bring Benji home by Christmas. Well, on Benji’s 122nd day post transplant he finally was able to return home from his journey in Philadelphia. Tonight, Benji is spending the night with his family at their home in NJ.

Although Benji is home from Philly, his journey is not over. He will continue to travel to Philly once a week and will also receive many types of therapy at home. He continues each day to learn new things and is the happy boy we all know and love.

Thank you to everyone who has supported our family over this leg of our journey. Although this is Benji’s life long journey, he is lucky to have so much support, love and prayers from you all.


Wishing you a wonderful holiday season and a happy new year!

Alyssa
-Be Brave Little One-
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Happy Giving Tuesday!

I wanted to take this moment to express my gratitude to each and everyone one of you. You have sent love, support, donations, prayers and more to our family and it is beyond generous. To the friends, families, strangers and more, THANK YOU! You have shown my family what real love looks like and its absolutely humbling.

Wishing you all a wonderful and happy holiday season. Please keep sending prayers in hopes Benji can be home before 2018.

-Be Brave Little One-

With utmost gratitude,
Alyssa
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Update:

Tomorrow is the big 100! 100 days post-transplant. This is a huge milestone for our little guy. We are endlessly amazed by his strength and resilience.

He still has some more time in Philly with his family before he can come back home. Keep sending your prayers, love, positivity and support to them and hopefully he is able to come home before the new year!

-Be Brave Little One-
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$44,089 of $45,000 goal

Raised by 539 people in 7 months
Created July 16, 2017
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$100
Anonymous
5 days ago
PH
$50
Patricia Homa
19 days ago
$25
Patricia Chiurazzi
19 days ago
PK
$100
Patti Kerr
1 month ago
$200
Anonymous
2 months ago
MT
$200
Maria Trachtenberg
2 months ago
MM
$100
MICHAEL MARTINO
2 months ago
PM
$50
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2 months ago
TR
$100
Timothy Rooney
2 months ago
TL
$50
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2 months ago
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