A very HAPPY BIRTHDAY to Tara White – one of the strongest, most determined people you could ever meet. We hope you have a wonderful day!
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Photo of Neil Hajjar
Friends,
Your kindness over these past several months has been nothing short of inspiring. You have provided Hope Strengthens with the means to:
* Assist Tara White in her battle against brain cancer.
* Issue a grant to The Jimmy Fund to help patient services programs at Dana-Farber Cancer Institute.
* Help survivors of the Boston Marathon tragedy via a donation to The One Fund.
* Contribute to a Birdies for the Brave event to help military personnel and their families.
We humbly ask for your support once again, this time for a 3-year old boy named Neil Hajjar. Neil is battling MECP2 Duplication Syndrome and Moyamoya Disease and we recently connected with his family to see what we could do to help. Neil requires therapy equipment that will help him build his core strength and balance (most items Neil needs have not been covered by insurance) and his family will need resources to assist with transportation and housing expenses as the family will all travel from New Jersey to Boston, MA to support Neil during his brain surgery and recovery at the end of July and into early August.
We asked Neil’s mom, Meg, if she could provide us with a note about Neil that we could share with our supporters and prospective donors. Here are Meg’s words…
“Neil was born weighing just 3 pounds and 1 ounce. He spent his first three and half months of life in the Neonatal Intensive Care Unit due to breathing and feeding problems. At nine months old Neil was diagnosed with a rare genetic condition called MECP2 Duplication Syndrome. It causes him to have very low muscle tone, developmental delays, intellectual disabilities, severe reflux, chronic constipation, high chance of seizures , many respiratory infections, absence of an effective cough, autistic tendencies and lack of speech. Because of his trouble with respiratory infections Neil has to have many different breathing treatments every day and when he is sick with a virus he needs them around the clock. He also has a g-tube that he uses for thin liquids and his medications because he is very high risk for aspiration.
Despite his daily struggle, Neil is an amazing and happy boy, who just wants to be around those he loves. One of his favorite things is listening to music, especially when someone sings to him in person. He loves to swing and bounce, which also helps to keep him calm and focused throughout his day. Neil with be three in August, but his development is around the age of a 7-11 month old. He cannot talk, crawl or walk, and he has just recently learned how to sit unassisted with some balance support.
Neil just recently suffered a stroke in the end of May and was hospitalized in the Pediatric Intensive Care Unit. After imaging of his brain were done it was discovered that he also suffers from another disorder called Moyamoya Syndrome. This condition effects the blood vessels in Neil’s brain and has made them very thick and narrow, so that blood has trouble circulating throughout his head. He will be having surgery on both sides of his brain at the end of July to help establish more blood flow throughout his head so that he will have less risk for a chance of future strokes.
This second diagnosis has really shaken our family to its core and we are keeping all our faith for a great outcome from Neil’s surgery. Neil has shown me so much about life and the things that truly matter. He has made me a better person in every way possible and I am so thankful and blessed to be his Mom. His family adores him, along with so many other people in his life, including nurses and therapists. All will be standing strong for him in the future.
Neil is such a brave boy and will continue to fight through all of his challenges with a smile on his face. We hope that more awareness can be made in regards to both MECP2 Duplication Syndrome and now Moyamoya Disease so that research can be done to help the lives of those affected. We hope for a happy life for Neil, with music, smiles and lots of laughs!” – Meg Hajjar
Please consider helping Neil today by donating online at:
https://www.hopestrengthens.org/donate-online
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HSF and Life is good
We are proud to announce that Hope Strengthens has been approved for Life is good’s affiliate program. This means that if you click on the Life is good logo on our home page and purchase items, Hope Strengthens will receive a commission that we can put to work to help those facing hardship as a result of illness or tragedy. Look good and do good all at the same time! #lifeisgood
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Photos from HSF’s 1st Annual Charity Golf Outing!
Check out the great photos (courtesy of Matthew Goethals) from HSF’s 1st Annual Charity Golf Outing in partnership with The Jimmy Fund at Walpole Country Club. In addition to preparing for next year’s outing, we are getting ready to announce a special event this fall. Stay tuned!