Lila Blackington has a busy schedule. She competes in pageants, she’s going on her 9th year of hip-hop dance, she volunteers at a horse rescue, she frequently organizes her own charity events, and she just started 6th grade. Lila also has a significant birth defect that affects her spine – she’s already undergone 5 surgeries and has limited feeling in her legs.
Diagnosed in the womb
“Lila has a type of spina bifida called lipomeningocele. This condition occurs early in pregnancy when the baby’s fat cells fail to separate from the distal end of their spinal cord,” said Carl Heilman, MD, Neurosurgeon-in-Chief at Tufts Medical Center. “This results in the spinal cord being tethered, or attached, to the tissues of the back.”
When a child with a tethered spinal cord grows, the spinal cord stretches and pulls instead of moving freely. That’s why Lila has had to have her spinal cord “untethered” by Dr. Heilman several times throughout her childhood and adolescence, until she stops growing. Lipomeningocele can result in a variety of health issues like muscle weakness and decreased sensation in the legs, foot abnormalities, difficulty walking, and loss of bladder control.
“Even though she can’t feel her legs, Lila doesn’t let that hold her back,” said her mom, Sarah. “She’s got a spirit like I’ve never seen and doesn’t shy away from anything.”
A rare defect
Lila is no stranger to Tufts MC — she has been treated by Dr. Heilman since before she was born, and he continues to follow her progress over the years. He has seen the rates of spina bifida decrease dramatically, so Lila’s family calls her a “unicorn” because lipomyelomeningocele has become so rare.
“When I came to Tufts MC in the 80’s, we saw about 15 babies each year born with spina bifida,” Dr. Heilman said. “Now we only see about one a year, so Lila is definitely a unique patient.”
You Don’t Have To Be Big To Be Strong
At Tufts Children's Hospital, we like to say that our tiny but mighty patients prove that You Don’t Have To Be Big To Be Strong. And Lila does just that. Her 4 years of competing in pageant competitions paid off when she was crowned Miss Northern States PreTeen in Connecticut this past month, despite being the smallest girl in her division.
Winning this title was no easy feat. Lila works diligently to perfect her walk in her leg braces, and she spends extra time practicing on her speech because of a cleft lip and palate repair surgery she had as a baby.
“I want to show girls that even if you are different you can still do anything,” she said.
Giving back to Tufts Children's Hospital
Lila has spent a good portion of her life in the hospital, so when she was finally able to spend the holidays at home with her family two years ago, she immediately thought of all the kids in the hospital who are unable to go home.
“We went around as a family saying what we were thankful for, and Lila said she was happy that she wasn’t in the hospital,” Sarah said. “That resonated with us and we began thinking of ways to make the holidays special for the children in the hospital.”
They came up with the idea of a toy drive, and named it Lila’s #TuftsKidsToyDrive. Then only 9 years old, Lila went out into the community to collect donations for the kids staying at Tufts Children's Hospital at Tufts Medical Center. This past year she donated 356 items to the Child Life team, and this year she raised that number to 618.
“We chose to donate to Tufts MC because that is where Lila has gotten all of her care. Dr. Heilman and his team have changed our quality of life so dramatically — I literally would not trust anyone else,” Sarah said. “He is courteous and down to earth, he listens and understands, and he really puts you at ease.”
For Lila, it’s a joy to give back to the hospital she’s spent so much time at. She feels comfortable and confident in the Tufts MC team, so she knows her hard work is worth it. Now, she and her family are gearing up for their next donation campaign in January.
“We feel blessed,” Sarah said. “I honestly think she’s here for a purpose and a greater reason, and none of this would be possible without Tufts MC.”
See Lila's Facebook page for her toy drive here.