Originally published in the Manchester Journal Dec. 27, 2017. 

LONDONDERRY — When Renee and Jeremy Smith welcomed their son Noah last February, they didn’t realize the rocky road that lay before them.

Noah was born three weeks early, but was otherwise a happy and healthy baby. Still, his parents began to notice some unusual attributes as time went on.

“We didn’t know that anything was wrong at birth, but one day we noticed that he had this asymmetry in his face,” said Renee Smith. “He looked like a pirate almost.”

Noah also suffered from enlarged gums and a small jaw, making it difficult for him to breastfeed. The Smiths brought him to a local pediatrician, who provided them with a referral to the neurology department of the Dartmouth-Hitchcock Medical Center.

When a visiting nurse from Londonderry’s Neighborhood Connections took a closer look, however, she urged them to take Noah to a doctor immediately.

“The visiting nurse didn’t like what she was seeing, and when she called Dartmouth they all agreed that he should go to the emergency room,” Smith said. “I dropped my husband off at work the next morning and took him to Dartmouth. It was my second time bringing both of the kids out by myself.”

Smith’s daughter Alyssa had just turned three that May, but handled the long trip with ease.

“My daughter was a complete angel while we were at the E.R.,” Smith said. “Dartmouth was great with her as well.”

After a long day at the hospital, Noah was diagnosed with a rare genetic bone disorder known as osteopetrosis. While the average person has cells that both build up and break down bones, those with osteopetrosis lack the cell responsible for breaking down bone matter. As a result, bones can become dense and brittle over time.

“The diagnosis sent Noah to Boston Children’s Hospital for a bone marrow transplant,” Smith explained. “I stayed with him in the hospital while Jeremy and Alyssa stayed home, visiting on weekends when possible.”

An MRI revealed that Noah had suffered bleeding in the brain. According to Smith, the bones in his head had become dense enough to cause permanent injury.

“When bones keep building up they can pinch the nerves, that’s why his facial asymmetry had appeared,” she said. “The nerves were starting to get pinched.”

While the bone marrow transplant halted further damage, the injuries that Noah had already endured could not be reversed.

“His optic nerves were so constricted that he was left with little to no vision at all,” Smith said. “We also have to keep an eye on his hearing, but so far so good.”

Smith and her son returned to their Londonderry home in October, and while Noah is doing well in his recovery there is still a long road ahead.

“He’s going to live a full and happy life, there’s just going to be some hurdles,” Smith said. “No one expects to raise a blind child, but here we are.”

While Smith was in Boston, her husband Jeremy had become the sole caretaker for Alyssa while working full time. Still, the Londonderry community rallied around him to provide support in a multitude of ways.

“People in the community babysat for her, and his boss worked with him so he could continue working,” Smith said. “Neighborhood Connections worked with my husband to make sure the bills were paid, and they made sure that Alyssa was able to attend a full-time summer program at school.”

Friends and neighbors brought meals to the house, Smith said, and some helped to mow the lawn. The outdoor sports shop Series 11 organized a raffle to raise funds for the family, and Londonderry’s Second Congregational Church also donated funds.

“So many people have donated money, services, and healing thoughts and prayers,” Smith said. “Neighborhood Connections set up a savings account at People’s United Bank, so that anyone can make a donation.”

Smith was shocked and heartened by the outpouring of support, she said. Though she has lived in the area for close to 15 years, she says that the community effort was “indescribable.”

“I didn’t grow up in Vermont; it’s amazing how people who don’t really know you are willing to do so much for others,” she said. “You never know what life is going to throw at you, so hold your loved ones tight and be there for each other when you can.”

Donations to the Smith family can still be made at People’s United Bank, and Smith encourages others to consider registering as a bone marrow donor at http://www.bethematch.org.

Reach Cherise Madigan at cmadigan@manchesterjournal.com, or by phone at 802-490-6471.

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