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Benjamin's MPS1 Journey

$45,210 of $50,000 goal

Raised by 558 people in 19 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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Happy 3rd birthday to our brave little man! Thanks you for your endless love and support during this journey.

Benji has been preparing with his new early intervention team to make sure he has services in place for school! Although he cannot start this week, its one step closer!

He recently got his port removed and will need a sedated hearing test in the near future. He still goes to CHOP often but is making positive progress.

His favorite things are: his family, mickey mouse, music and play-doh.


-Be Brave Little One-
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Happy Holidays to you all. Thank you for your endless love, support, prayers and positivity.

Benji continues to be a strong boy who overcomes so many of his challenges. He continues to go to CHOP about weekly/every other week for monitoring, tests, etc. He interacts lovingly with his family and continues to make such progress with his therapeutic disciplines. He continues to use sign language but is making good progress with using words. He always is looking to assert his independence in everything he does (even taking his own medications orally).


He loves to play with playdoh, cars, stickers and more with his little brother TJ. They are absolutely the best of friends.

His smile and laugh lights up every room. We are thankful everyday for his happiness.

Again, Happy Holidays and Happy New Year.

-Be Brave Little One-
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Happy Rebirthday Benji! Over the past 365 days you have been through so much and have always remained so strong. Your smile is infectious and you are so loved.
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$45,210 of $50,000 goal

Raised by 558 people in 19 months
Created July 16, 2017
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LM
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Lee McAna
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Talya Shuminer
17 days ago
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17 days ago
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17 days ago
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6 months ago
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MP
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