A one-year-old girl whose leg broke during birth will finally receive surgery to attempt to fix her limb after doctors said the injury would never heal due to a rare genetic disorder.
In December of 2016, Allon, 34, and Lauren Theilen, 31, welcomed twins Evelyn and Jackson at a New York hospital, but the excitement of delivery was overshadowed by the news that Evelyn’s leg broke during the planned c-section.
Within an hour, the first-time parents were told that while their son Jackson was seemingly healthy, their daughter suffered from a rare genetic disorder that meant the bones in her leg would never heal.
Doctors said her only option would be amputation, prompting the family to search across the country for a specialist who would consider another option.
Speaking to Daily Mail Online, Allon described his daughter’s diagnosis as ‘disastrous to say the least,’ but said there is finally hope as a doctor in Florida is set to operate on Evelyn today in an attempt to give her a shot at a normal life.
Allon and Lauren only shared the news of their daughter’s diagnosis with close family and friends but are now opening up to raise awareness about these rare conditions.
He told Daily Mail Online: ‘Within an hour [of their birth], there was all different types of doctors bombarding my wife and I. They all had one message to share; that my daughter’s leg was never going to heal, and we should get comfortable with the notion of amputation. That destroyed us.’
Evelyn suffers from a condition called pseudarthrosis of the tibia, defined as a ‘false joint’ and a break in the bone that cannot heal on its own.
It usually develops within the first two years of life and is very rare, affecting one out of 250,000 births.
Her condition was caused by an underlying genetic disease called neurofibromatosis (NF1) which causes tumors to grow all over the body, and in rare cases pseudarthrosis.
It is also unclear if there was any negligence during the delivery that caused her leg to break which led to the diagnosis.
The family from Long Island still do not know how this will affect Evelyn’s developmental and cognitive skills, but so far she is keeping up with her twin brother as they both reach milestones.
‘She’s mimicking him (Jackson) and standing on one leg,’ Allon said. ‘She sees what he does and and knows to crawl because he crawls and they both say words like ”mama”’.
Allon said at the time he and his wife had never heard of either conditions before.
‘Her genetic test came back positive for Neurofibromatosis Type 1 or NF1,’ Allon said. ‘Our nightmares became a reality.’
Refusing to believe that their daughter’s leg would never heal, they sought out the best orthopedist in New York who attempted splints, casts and braces on Evelyn’s broken bones.
Though she was not in any pain from the break, after four weeks the bone segments only became worse.
This prompted the couple, who both have taken time off from their jobs in retail, to make calls and trips along the eastern seaboard from Boston to Washington DC to Florida.
In that time Evelyn was in a cast and wore a brace which made no difference to the broken bones.
‘We had an orthopedic brace made for her but the break is so low that her foot flops to the side so she doesn’t use it anymore,’ Allon said.
The broken leg is about five centimeters shorter than the other but the break is not too noticeable to the naked eye.
Now, at 13 months old, the broken bones have begun absorbing into her body, meaning she needs either a corrective surgery or amputation.
The Theilens finally found a world-renowned doctor in West Palm Beach, Florida, who agreed to look at their daughter’s case.
Dr Dror Paley specializes in leg lengthening and has developed over 100 new operative procedures for bone disorders.
Evelyn’s first surgery is set for Thursday, which will essentially build a new ‘super bone’, according to Allon.
Using hip and pelvic bone matter, Dr Paley and his team will create a new tibula and fibula kept in place with rods, screws and plates.
They will also cut out diseased bone, which will leave Evelyn’s leg about 10 centimeters shorter than the other.
More surgeries and procedures will follow to even the legs out, including using an external brace or external fixation device.
The family has traveled from New York to Florida several time for consultations with Dr Paley, which has put stress on them financially.
They have created a GoFundMe to help with travel and medical expenses.
The family will stay in Florida for five to seven weeks while she heals, leaving their son Jackson in New York while they tend to their daughter.
‘This is just the tip of the iceberg,’ Allon said. ‘There will be multiple surgeries, including stretching of the bones, replacing rods and adding/removing plates, to take place until she reaches her late teens or early twenties.’
He said that with the proper care, Evelyn will be able to walk.
If she were to break another bone it is unclear if it will be able to heal, but Evelyn’s parents said they will not put her in any sports for fear that her condition would return.
‘She will battle this forever. But she will win,’ Allon said.