Evelyn's battle with NF1
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On December 20th 2016, my wife and I welcomed our two beautiful children into this world. Being first time parents, and having twins, was an exciting but scary time for us. When my daughter was born, her leg was broken during delivery. This devastated us. Within an hour, 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.
Here we are, parents for all of 60 minutes, being told Evelyn would lose her leg. You couldn't imagine the heartache we felt. For the past nine months every single Dr we saw, stated what a beautiful, perfect and healthy pregnancy Lauren was having.
They used a bunch of medical mumbo jumbo we didn't understand. Our minds were a blur and our hearts ached. They said she had a very, very rare condition called Psuedoarthrosis of the Tibia. A condition that 50% of the time, is caused by a genetic disease called Neurofibromatosis. Refusing to believe them, we sought out the best orthopedist and attempted splints, casts and braces. After 4 weeks, the bone segments only became worse. We realized the condition was a reality. Within just a few short days after, her genetic test came back positive for Neurofibromatosis Type 1 or NF1. Our nightmares became a reality.
NF1 is cancer related disease that causes tumors to grow anywhere on her body, particularly on her nervous system. Symptoms vary from large birthmarks, optic gliomas to bumps all over skin. The rarest symptom of this disease, is the bone problem Evelyn has. Odds are 1 in 390,000. So since Evelyn was born she has had a broken tibia and fibula and her legs are no longer equal lengths.
We have traveled all over the US looking for the best doctors to fix her leg. They all gave a bleak outlook. We became subject matter experts and refused to give in. We then found the #1 Dr in the world to attempt to fix her leg. We've made several trips to Florida to meet with this doctor and schedule her surgery. That surgery is next week. Last week, we flew down to FL so she can have an infusion. A 13 month old girl hooked up to an IV for 5 hours was tough to watch. Now I'm driving across the country and we are preparing for the most difficult thing we will ever experience in our lives. We will be here for 5+ weeks and away from our son Jackson the entire time. Once released to go back to NY, further recovery and bone healing will take months. There is no guarantee the bone will heal.
Evelyn will have a bone graft taken from both sides of her hips. Her two leg bones will be hollowed and filled with rods. There will be plates, screws, nails and fixators used to attempt to union her bones. Those devices will be in her leg for the rest of life. If you know my Daughter, you know she is a feisty, fierce, strong and determined little girl. She will prevail, and she will learn to walk and use her leg.
This is just the tip of the iceberg. 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. She will battle this forever. But she will win. Lauren and I have exhausted our life savings on medical expenses, flights, hotels, etc. Even with insurance this surgery will cost us $10,000. And there will be dozens of surgeries over the years. We have decided to start a GoFundMe for Evelyn to help cover some of her medical costs so she can continue to get the best care in the world.
We shared our story with you. We now ask you to share this story, to help raise awareness of this awful disease and put thousands of those affected by it, closer to a cure.
#endNF
ctf.org
#FCancer
Here we are, parents for all of 60 minutes, being told Evelyn would lose her leg. You couldn't imagine the heartache we felt. For the past nine months every single Dr we saw, stated what a beautiful, perfect and healthy pregnancy Lauren was having.
They used a bunch of medical mumbo jumbo we didn't understand. Our minds were a blur and our hearts ached. They said she had a very, very rare condition called Psuedoarthrosis of the Tibia. A condition that 50% of the time, is caused by a genetic disease called Neurofibromatosis. Refusing to believe them, we sought out the best orthopedist and attempted splints, casts and braces. After 4 weeks, the bone segments only became worse. We realized the condition was a reality. Within just a few short days after, her genetic test came back positive for Neurofibromatosis Type 1 or NF1. Our nightmares became a reality.
NF1 is cancer related disease that causes tumors to grow anywhere on her body, particularly on her nervous system. Symptoms vary from large birthmarks, optic gliomas to bumps all over skin. The rarest symptom of this disease, is the bone problem Evelyn has. Odds are 1 in 390,000. So since Evelyn was born she has had a broken tibia and fibula and her legs are no longer equal lengths.
We have traveled all over the US looking for the best doctors to fix her leg. They all gave a bleak outlook. We became subject matter experts and refused to give in. We then found the #1 Dr in the world to attempt to fix her leg. We've made several trips to Florida to meet with this doctor and schedule her surgery. That surgery is next week. Last week, we flew down to FL so she can have an infusion. A 13 month old girl hooked up to an IV for 5 hours was tough to watch. Now I'm driving across the country and we are preparing for the most difficult thing we will ever experience in our lives. We will be here for 5+ weeks and away from our son Jackson the entire time. Once released to go back to NY, further recovery and bone healing will take months. There is no guarantee the bone will heal.
Evelyn will have a bone graft taken from both sides of her hips. Her two leg bones will be hollowed and filled with rods. There will be plates, screws, nails and fixators used to attempt to union her bones. Those devices will be in her leg for the rest of life. If you know my Daughter, you know she is a feisty, fierce, strong and determined little girl. She will prevail, and she will learn to walk and use her leg.
This is just the tip of the iceberg. 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. She will battle this forever. But she will win. Lauren and I have exhausted our life savings on medical expenses, flights, hotels, etc. Even with insurance this surgery will cost us $10,000. And there will be dozens of surgeries over the years. We have decided to start a GoFundMe for Evelyn to help cover some of her medical costs so she can continue to get the best care in the world.
We shared our story with you. We now ask you to share this story, to help raise awareness of this awful disease and put thousands of those affected by it, closer to a cure.
#endNF
ctf.org
#FCancer
Organizer
Allon Theilen
Organizer
Smithtown, NY
