CLAREMONT, N.H. – Madilynn “Maddie” Grace Smith was born at Dartmouth Hitchcock Medical Center, on Sept. 9, 2025, to proud parents J.J. and Kirsten Smith. Although Maddie arrived five weeks and two days earlier than expected, initially she seemed healthy, said Maddie’s grandfather Brett Smith.
“She was placed in the neo[natal] ICU as a precaution,” recalled Brett. “This turned out to be a lifesaving decision.” The determining factor was the two additional days, which put Maddie within the protocol for intensive care.
The medical staff closely monitored Maddie’s hypertension, and a nurse ordered some routine laboratory tests. The day Maddie was expected to leave the hospital, the test results came back showing dangerously low levels of sodium. “If we had taken her home like that, it’s likely she would have had seizures,” Brett relayed.
After more tests, Maddie was diagnosed with a rare and degenerative kidney disease called congenital nephrotic syndrome, which was causing her kidneys to fail. She had retained so much fluid she could not open her eyes. The baby was immediately airlifted to Boston Children’s Hospital, where doctors performed emergency dialysis.
Maddie remains in the hospital while undergoing more medical procedures, making slow but steady progress. Her doctors are aiming to send her home by April 2026, if not sooner.
Kirsten is just beginning to feel some relief. She said Maddie has been successfully weaned off sedation drugs, and “is finally getting to the point where I can hold her. She’s started to take a pacifier, and is allowed to have tiny stuffed animals and a swaddle blanket in her crib. Things are better now. We are finally in a good place.”
“The first five or six weeks were really a roller coaster,” Kirsten shared. “Things were very scary at first, and full of uncertainty. Lots of people were going to church and praying for her.”
The Smith family is incredibly thankful for the care and expertise they have received from the staff at Boston Children’s Hospital, which was recently named “best hospital for pediatric nephrology” by U.S. News & World Report.
“Everyone that has met Maddie has taken a shine to her,” Brett said.
Kirsten agreed. “Her surgeon literally told me, ‘I’m going to be Maddie’s surgeon until she graduates from high school,’” recalled Kirsten.
Congenital nephrotic syndrome can be fatal if not treated early and aggressively. Maddie will need consistent dialysis treatments until her body is strong enough to accept a kidney transplant. Kirsten explained that before Maddie can undergo kidney transplantation, she must be at least 1 year old, weigh 22 pounds, and be a minimum of 25 inches long. “Maddie might be closer to 1 and a half years old before she gets to that weight,” Kirsten relayed.
In the meantime, friends, family, and the community have continued to show an almost overwhelming amount of support. “We are fortunate,” admitted Brett. “Our village is large.”
Kirsten and J.J. have another daughter, Charlotte, a first grader at Sunapee Elementary. Kirsten has been commuting back and forth between New Hampshire and Boston, still managing to keep her home-cleaning business operating. J.J. owns his own small business as well, a landscaping and property-maintenance company called Smith Family Landscaping.
Brett said his wife Kati is the family member consistently staying in the city with Maddie. Boston Children’s Hospital offers discounted housing for the families of their young patients, and Kati, who is retired, has been there since Oct. 4. Brett’s sister lives in Richmond, Vt., and assists with taking care of Charlotte and other tasks, filling in as needed.
“This family is tight knit,” Brett related. “We all went into full planning mode – contingencies upon contingencies.”
In fact, Brett said, the entire extended family is getting an education in nephrology, and learning how to operate a peritoneal dialysis (PD) cycler machine. The medical device cleanses the blood through the peritoneum, removing excess fluid and toxins.
Being such a young organ recipient means that Maddie will require several transplants over her lifetime, due to her longer life expectancy compared to adult recipients. The estimated half-life for transplanted kidneys in children is generally in the range of 12-15 years.
“Finding matching donors will be the next step,” Brett stated, adding that the family had already offered, “let us know and we can start getting tested.”
Brett works in finance, and took it upon himself to start up a crowdfunding page to raise money on behalf of Kirsten and J.J. Reaching out to AngeLink was a “huge relief,” said Brett. “They have been amazing, asking how they can help, supporting the fundraiser as it gained momentum.”
On AngeLink’s “Help Maddie’s Miracle” page, Brett wrote, “[Maddie’s] journey to recovery has been filled with immense challenges and risks. Maddie’s parents, J.J. and Kirsten, face not only the emotional turmoil of having a critically ill child, but also the daunting financial burden. With medical bills, lodging expenses, and the loss of income while staying in Boston…they are in urgent need of support. Any help you can provide will be deeply appreciated, and will be used thoughtfully and responsibly.”
The link to Maddie’s AngeLink fundraiser is www.angelink.com/fundraiser-public/e3312194-274b-4786-945f-32f4f571bfae. A recent update by Brett reported, “Maddie [is] closer to leaving the NICU and moving to the general nursery, where she’ll continue dialysis and grow stronger until she’s ready for transplant surgery. While we know there will still be bumps along the way, the past couple of weeks have been very positive. Adding to the good news, we were notified by a family friend that the company he works for – Modern Woodmen Fraternal Financial – has a matching program. Four chapters have come together to collectively match the $10,000 in donations made to the fundraiser. We, and J.J. and Kirsten especially, are so appreciative of all the support so far – through donations, prayers, and encouragement. Thank you for following Maddie’s story, and for sharing it!”