
Help Hudson Get Back on His Feet
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Hudson, of Yorba Linda, CA, was born with PFFD otherwise known as Proximal Femoral Focal Deficiency. This rare birth defect affects the pelvis, hip bone and the proximal femur bone and causes one leg to be shorter than the other.
Our family is raising money to cover living expenses and costs not covered by insurance over a 6 month period in the Fall of 2016 for Hudson and, his mom, Lisa. The 4-6 months being away from school and his friends will be very difficult for both of them. Lisa will not be able to work during that time, so the donations will be used to cover two sets of living expenses for her home in California and her temporary stay in Florida.
Here is Hudson's story, from first diagnosis, as told by Lisa.
After researching the disease and realizing that amputation was also a big part of it I knew I had to find a specialist who was familiar with PFFD. I found a doctor at CHOC (Children’s Hospital Orange County) who was supposed to be one of the best with these type of birth defects. I made an appt when Hudson was about 2 months old. This doctor said there is a limb lengthening surgery available for some children with this disease but more times than not the children who are not candidates for this special surgery have their legs amputated. He said we would have to wait until Hudson’s femoral head was developed which would be at 6 months to see if he was a candidate for this lengthening surgery.
When Hudson was 6 months old we came back for X-rays. The doctor said it appeared his femoral head had no sign of the disease and he should be able to perform the surgery but wanted us to do follow up check ups for another 6 months. Finally when Hudson was just over a year old the doctor decided to do the surgery. I was told at the time he was the youngest child to ever have this limb lengthening surgery. In surgery the doctors break the femur bone and separate it then attach 6 inch screws on each side of the break and attach an external fixator to the screws, all of this is done through an incision the length of the thigh.
After a brief waiting period I was given a special tool that I would use to lengthen his leg three times a day. Everything seemed to be going well till we reached a point where the device had to be reset so we went back in the hospital for this minor procedure and then continued to lengthen. Within a couple of days after this Hudson started to become very irritable and started to cry a lot so I took him into the emergency dept for X-rays and they said the bone had broke and they would have to do emergency surgery to see if they could fix it or they would have to remove it all together. When Hudson came out of surgery they said they could not fix it so decided to remove the fixator and put him in a spica cast which is essentially a body cast from the waist down. Hudson had to remain in this cast for 7 weeks while the bone healed. When we came back to the doctor to have the cast removed he recommended that Hudson go through with the leg amputation because he felt the next surgery might not work either.
I knew as a Mother amputation would be my very last resort and I would exhaust every possibility before I would even consider that option for my son.
Hudson went to physical therapy weekly after his surgery and did not start walking without his walker until he was 2 ½ yrs old. We had to get him a shoe with a 6 centimeter lift on it so he could walk.
Despite Hudson’s disability it did not slow him down much, he was very active in school and played Little League Baseball. He was very determined not to let anything stand in his way.
As Hudson grew the discrepancy in his leg started getting worse so I knew I would need to find another doctor that could help us this time but with better results. I was referred to a doctor at Children’s Hospital Los Angeles this time that had preformed several limb lengthening procedures so made an appt to see him in August 2009. This doctor said Hudson should of never had his first surgery at such a young age and that was probably why it failed. He wanted to monitor Hudson for about a year with monthly visits before he decided to do any surgery. On July 16th 2010 Hudson had his second lengthening surgery he was now 9 yrs old and his leg discrepancy was about 9 centimeters. He was again fixed with an external fixator with screws on both sides of the break in the femur. This doctor also put pins in his tibia to stabilize his knee. Hudson lost a lot of blood during this surgery and had to have several units of blood and platelets after surgery. After surgery Hudson had to use crutches to get around because he could not put any weight on his leg. We again waited a week before we could start the lengthening process and then we started lengthening 3 times a day every 8 hrs. We went back for weekly doctor visits and Xrays to make sure everything was going as planned. Hudson also had physical therapy 3 times a week to improve mobility in his leg. On August 27th 2010 Hudson had another surgery to remove the tibia pins. After the pins were removed he never really gained the range of motion back in his knee and continued to have a problem with this. We were reaching our goals this time with the lengthening and were at about 6 centimeters of new length so the doctor didn’t want to stress out the bone anymore and decided we could remove the fixator. Hudson had surgery on Dec 3rd 2010 to remove the fixator. He was instructed to use crutches and to not weight bear on his left leg. He would continue with the weekly physical therapy and come see the doctor in a few weeks. After about a week and a half I started to notice that his leg looked odd and it was starting to curve more by his knee so I called his doctor to tell him and he said to bring him and asked me if Hudson was in any pain, Hudson was not experiencing any pain so he said his leg could not be broken but bring him in. When we got to the doctor’s office he said immediately just by looking at it that Hudson’s leg was broken and he would have to have surgery to repair it. So Dec 17th 2010 Hudson had surgery, a large plate and several screws were put in his leg to repair the break and to keep the bone stable. When the doctor came out of surgery he had informed us that Hudson had lost all of the new length he had grown and also about 2 centimeters more during the surgery which now made his left leg 11 centimeters shorter. During a couple of follow up appts with this doctor he had suggested Rotation Plasty to me which is a form of amputation because he felt that Hudson was no longer a candidate for limb lengthening surgery and would not recommend we try it again.
While Hudson was doing his weekly physical therapy I starting taking with his therapist about one of his lengthening patients who went to have surgery in Florida with a Dr. Paley at Paley Advanced Limb Lengthening Institute he said she had great results. I started to do some research on Dr. Paley and realized how qualified he was with Hudson’s disease and how he could be our last hope. I knew getting to Florida would be no easy task so I had a fundraiser to raise money so Hudson and I could get to Florida. So I called Dr. Paley to set up an appt for Hudson to get another opinion. It took 3 months to get an appt with him because he is so busy and has so many patients come from all over the world. We finally got an appt on August 17th 2012. We had X-rays done and then saw Dr. Paley, he asked us about all of Hudson’s past surgeries and said that he was certainly a candidate for a limb lengthening and did not understand why the other doctors had suggested amputation. He did mention that we were lucky that Hudson’s leg broke on his last lengthening because if it hadn’t his hip would of dislocated and we would have had bigger problems. He said Hudson’s first surgery would be a triple periacetabular osteotomy on his left hip and he would also remove the hardware from his previous surgery. This hip surgery would prepare his hip for the next lengthening process. We set an appt for this surgery on Dec 11th 2013.
We came home from Florida and I knew I had to get busy fundraising to pay for our stay while we were there. With this first surgery we stayed in Florida for a month.
Hudson’s hip surgery went well, he was in surgery for almost 9 hours and much of that was repairing the damage that was done in his prior surgeries, again he lost a lot of blood and had to have 5 blood transfusions total. He was in a lot of pain and had to be in the hospital 9 dys for recovery. While we were in Florida we started physical therapy and would continue therapy when we come back home. Dr. Paley said Hudson’s surgery was a success and would like us back in about 9-12 months for his lengthening surgery.
All of Hudson’s X-rays we sent to Dr. Paley looked good so we set up an appt for Hudson’s lengthening surgery on Nov 7th 2014. This time Dr. Paley decided Hudson was a good candidate for an internal lengthening device called the Precice. This nail is inserted into the femur bone and lengthens internally. With this process there are no open incisions that can get infected like on the external fixators. The bone is again separated and the nail which has a magnet in it is inserted into the bone marrow and using a device externally that locates the magnet and causes the Precice to rotate which in turn lengthens the femur.
Hudson’s surgery went as planned and we were able to start lengthening within 6 dys after surgery. We lengthened 3 times a day at .75 millimeters a day. Our goal with this surgery was to gain 8 centimeters of new bone length, at this point in time his discrepancy is 13 centimeters. We were required to stay in Florida for the entire lengthening process which was 4 months. During our stay Hudson would have 3 hours of physical therapy everyday to keep his range of motion. In February the doctor noticed the new bone looked a little thin so he slowed our lengthening down to twice a day. Our last day of lengthening was March 3rd 2015. We came back to California that week. When we got home Hudson still has physical therapy and exercises to do at home. We send Dr. Paley X-rays every 6 weeks so he can make sure his bone is healing correctly. After the bone started to solidify we had to go back to Florida to have the Precice nail removed and have a temporary rod put in. We went back to Florida May 31st 2015. Hudson had surgery and we were able to go back home on June 6th 2015.
After this surgery Hudson has 7 centimeters of new bone which is 2.76 inches. This surgery has been life changing for him knowing that there is a doctor that can make his leg the same length as his other one. Hudson is still 7 centimeters shorter in his left leg and wears a lift on his shoe and will require an additional surgery or two in Florida. We are scheduled to have another surgery in the summer or early fall of 2016. This next surgery will again require us to stay in Florida for another 4-6 months.
Our family is raising money to cover living expenses and costs not covered by insurance over a 6 month period in the Fall of 2016 for Hudson and, his mom, Lisa. The 4-6 months being away from school and his friends will be very difficult for both of them. Lisa will not be able to work during that time, so the donations will be used to cover two sets of living expenses for her home in California and her temporary stay in Florida.
Here is Hudson's story, from first diagnosis, as told by Lisa.
After researching the disease and realizing that amputation was also a big part of it I knew I had to find a specialist who was familiar with PFFD. I found a doctor at CHOC (Children’s Hospital Orange County) who was supposed to be one of the best with these type of birth defects. I made an appt when Hudson was about 2 months old. This doctor said there is a limb lengthening surgery available for some children with this disease but more times than not the children who are not candidates for this special surgery have their legs amputated. He said we would have to wait until Hudson’s femoral head was developed which would be at 6 months to see if he was a candidate for this lengthening surgery.
When Hudson was 6 months old we came back for X-rays. The doctor said it appeared his femoral head had no sign of the disease and he should be able to perform the surgery but wanted us to do follow up check ups for another 6 months. Finally when Hudson was just over a year old the doctor decided to do the surgery. I was told at the time he was the youngest child to ever have this limb lengthening surgery. In surgery the doctors break the femur bone and separate it then attach 6 inch screws on each side of the break and attach an external fixator to the screws, all of this is done through an incision the length of the thigh.
After a brief waiting period I was given a special tool that I would use to lengthen his leg three times a day. Everything seemed to be going well till we reached a point where the device had to be reset so we went back in the hospital for this minor procedure and then continued to lengthen. Within a couple of days after this Hudson started to become very irritable and started to cry a lot so I took him into the emergency dept for X-rays and they said the bone had broke and they would have to do emergency surgery to see if they could fix it or they would have to remove it all together. When Hudson came out of surgery they said they could not fix it so decided to remove the fixator and put him in a spica cast which is essentially a body cast from the waist down. Hudson had to remain in this cast for 7 weeks while the bone healed. When we came back to the doctor to have the cast removed he recommended that Hudson go through with the leg amputation because he felt the next surgery might not work either.
I knew as a Mother amputation would be my very last resort and I would exhaust every possibility before I would even consider that option for my son.
Hudson went to physical therapy weekly after his surgery and did not start walking without his walker until he was 2 ½ yrs old. We had to get him a shoe with a 6 centimeter lift on it so he could walk.
Despite Hudson’s disability it did not slow him down much, he was very active in school and played Little League Baseball. He was very determined not to let anything stand in his way.
As Hudson grew the discrepancy in his leg started getting worse so I knew I would need to find another doctor that could help us this time but with better results. I was referred to a doctor at Children’s Hospital Los Angeles this time that had preformed several limb lengthening procedures so made an appt to see him in August 2009. This doctor said Hudson should of never had his first surgery at such a young age and that was probably why it failed. He wanted to monitor Hudson for about a year with monthly visits before he decided to do any surgery. On July 16th 2010 Hudson had his second lengthening surgery he was now 9 yrs old and his leg discrepancy was about 9 centimeters. He was again fixed with an external fixator with screws on both sides of the break in the femur. This doctor also put pins in his tibia to stabilize his knee. Hudson lost a lot of blood during this surgery and had to have several units of blood and platelets after surgery. After surgery Hudson had to use crutches to get around because he could not put any weight on his leg. We again waited a week before we could start the lengthening process and then we started lengthening 3 times a day every 8 hrs. We went back for weekly doctor visits and Xrays to make sure everything was going as planned. Hudson also had physical therapy 3 times a week to improve mobility in his leg. On August 27th 2010 Hudson had another surgery to remove the tibia pins. After the pins were removed he never really gained the range of motion back in his knee and continued to have a problem with this. We were reaching our goals this time with the lengthening and were at about 6 centimeters of new length so the doctor didn’t want to stress out the bone anymore and decided we could remove the fixator. Hudson had surgery on Dec 3rd 2010 to remove the fixator. He was instructed to use crutches and to not weight bear on his left leg. He would continue with the weekly physical therapy and come see the doctor in a few weeks. After about a week and a half I started to notice that his leg looked odd and it was starting to curve more by his knee so I called his doctor to tell him and he said to bring him and asked me if Hudson was in any pain, Hudson was not experiencing any pain so he said his leg could not be broken but bring him in. When we got to the doctor’s office he said immediately just by looking at it that Hudson’s leg was broken and he would have to have surgery to repair it. So Dec 17th 2010 Hudson had surgery, a large plate and several screws were put in his leg to repair the break and to keep the bone stable. When the doctor came out of surgery he had informed us that Hudson had lost all of the new length he had grown and also about 2 centimeters more during the surgery which now made his left leg 11 centimeters shorter. During a couple of follow up appts with this doctor he had suggested Rotation Plasty to me which is a form of amputation because he felt that Hudson was no longer a candidate for limb lengthening surgery and would not recommend we try it again.
While Hudson was doing his weekly physical therapy I starting taking with his therapist about one of his lengthening patients who went to have surgery in Florida with a Dr. Paley at Paley Advanced Limb Lengthening Institute he said she had great results. I started to do some research on Dr. Paley and realized how qualified he was with Hudson’s disease and how he could be our last hope. I knew getting to Florida would be no easy task so I had a fundraiser to raise money so Hudson and I could get to Florida. So I called Dr. Paley to set up an appt for Hudson to get another opinion. It took 3 months to get an appt with him because he is so busy and has so many patients come from all over the world. We finally got an appt on August 17th 2012. We had X-rays done and then saw Dr. Paley, he asked us about all of Hudson’s past surgeries and said that he was certainly a candidate for a limb lengthening and did not understand why the other doctors had suggested amputation. He did mention that we were lucky that Hudson’s leg broke on his last lengthening because if it hadn’t his hip would of dislocated and we would have had bigger problems. He said Hudson’s first surgery would be a triple periacetabular osteotomy on his left hip and he would also remove the hardware from his previous surgery. This hip surgery would prepare his hip for the next lengthening process. We set an appt for this surgery on Dec 11th 2013.
We came home from Florida and I knew I had to get busy fundraising to pay for our stay while we were there. With this first surgery we stayed in Florida for a month.
Hudson’s hip surgery went well, he was in surgery for almost 9 hours and much of that was repairing the damage that was done in his prior surgeries, again he lost a lot of blood and had to have 5 blood transfusions total. He was in a lot of pain and had to be in the hospital 9 dys for recovery. While we were in Florida we started physical therapy and would continue therapy when we come back home. Dr. Paley said Hudson’s surgery was a success and would like us back in about 9-12 months for his lengthening surgery.
All of Hudson’s X-rays we sent to Dr. Paley looked good so we set up an appt for Hudson’s lengthening surgery on Nov 7th 2014. This time Dr. Paley decided Hudson was a good candidate for an internal lengthening device called the Precice. This nail is inserted into the femur bone and lengthens internally. With this process there are no open incisions that can get infected like on the external fixators. The bone is again separated and the nail which has a magnet in it is inserted into the bone marrow and using a device externally that locates the magnet and causes the Precice to rotate which in turn lengthens the femur.
Hudson’s surgery went as planned and we were able to start lengthening within 6 dys after surgery. We lengthened 3 times a day at .75 millimeters a day. Our goal with this surgery was to gain 8 centimeters of new bone length, at this point in time his discrepancy is 13 centimeters. We were required to stay in Florida for the entire lengthening process which was 4 months. During our stay Hudson would have 3 hours of physical therapy everyday to keep his range of motion. In February the doctor noticed the new bone looked a little thin so he slowed our lengthening down to twice a day. Our last day of lengthening was March 3rd 2015. We came back to California that week. When we got home Hudson still has physical therapy and exercises to do at home. We send Dr. Paley X-rays every 6 weeks so he can make sure his bone is healing correctly. After the bone started to solidify we had to go back to Florida to have the Precice nail removed and have a temporary rod put in. We went back to Florida May 31st 2015. Hudson had surgery and we were able to go back home on June 6th 2015.
After this surgery Hudson has 7 centimeters of new bone which is 2.76 inches. This surgery has been life changing for him knowing that there is a doctor that can make his leg the same length as his other one. Hudson is still 7 centimeters shorter in his left leg and wears a lift on his shoe and will require an additional surgery or two in Florida. We are scheduled to have another surgery in the summer or early fall of 2016. This next surgery will again require us to stay in Florida for another 4-6 months.
Organizer
Lisa Townsend
Organizer
Yorba Linda, CA