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Reid Davis Underwood was born on May 20, 2014 in Atlanta, GA. The pregnancy was just as normal as the two previous pregnancies with Reid’s older sister, Avery (5) and older brother, Barrett (3). When Reid was born, however, he was missing most of the skin on both of his feet, the skin on one shin up to his knee, the skin on the backs of his hands and a large spot on his back. Soon after, the delivering hospital transferred Reid to Children’s Hospital of Atlanta (Egleston Hospital), where Reid was admitted to the NICU for 2 weeks. At that time, a biopsy test result confirmed the family’s worst fears that Reid had what is considered one of the worst types of a disorder called Epidermolysis Bullosa (EB).  newborn

Reid dressed for the first time, ready to go home.

Reid dressed for the first time, ready to go home.

 

 

 

Example of blistering that occur from even minor activity,

Example of blistering that occurs from even minor activity.

 Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that causes painful blistering of the skin and the mucous membranes. It affects one in every 50,000 live births and can often times be fatal within the first year. Recessive Dystrophic EB (RDEB) is one of the most severe forms of EB, which is characterized by the absence of Collagen VII, which is one of the proteins that keep the layers of skin together. Severe cases of this condition involve widespread blistering externally and internally, disfigurement(fusion of the fingers and toes from scarring; joint deformity) from repeated scarring and other serious medical problems (e.g., severe infections, skin cancer). RDEB affects less than 1 per million newborns. You can read more about Epidermolysis Bullosa on the link on the main navigation bar at the top of this page.

A smile to melt your heart. initially, wounds were mainly on his legs, hands, and back.

A smile to melt your heart. initially, wounds were mainly on his legs, hands, and back.

Even common newborn movements and experiences begin to take their toll.

Even common newborn movements and experiences begin to take their toll.

Reid is blessed with an amazing family. Now we know where he gets his smile and toughness.

Reid is blessed with an amazing family. Now we know where he gets his smile and toughness.

Here is Reid with his older sister Avery and his younger brother Barrett. They have learned special ways to interact with their little brother. That is not easy for young energetic souls.

Here is Reid with his older sister Avery and his older brother Barrett. They have learned special ways to interact with their little brother. That is not easy for young energetic souls.

Reid’s endures daily what most of us can’t even imagine.  Wound care usually takes a couple of hours each day. Beyond just how long it takes, this procedure usually involves bleach or vinegar bath to disinfect the wounds. Blisters must also be drained to reduce pressure and pain. Topical ointments are applied to reduce infection and prepare the skin for special bandages. Bandages have to be non-adhesive, no tape can be used but instead they are wrapped in gauze.  Pressure points and friction have to be avoided. It is a challenge each and every day to get all of this right and keep the wounds from becoming infected.

Audra learns to carry out the daily wound care that is necessary to avoid infection.

Audra learns to carry out the daily wound care that is necessary to avoid infection.

Wounds happen daily. A toy to the face...in this case Reid stuck his hand under an ottoman.

Wounds happen daily. A toy to the face…in this case Reid stuck his hand under an ottoman.

 Medications are a consistent part of Reid’s life.  Reid has been on pain medications since he was born.  Initially, it was morphine but over time he has also had to take methadone and pain management medications.  Many of these medicines have to continually be increased and the chance of addiction and other side effects are high. Knowing your child is in constant pain and seeing the effects of these high powered pharmaceuticals has led the family to research and now become advocates for the use of medical marijuana to help treat the pain and itching associated with wound healing.

Advocating to change the laws in Georgia to allow Reid to be able to access medicines with better effects and less side effects.

Advocating to change the laws in Georgia to allow Reid to be able to access medicines with better effects and less side effects.

 

 feeding pic EB not only effects the skin, but also internal organs.  Seemingly simple activities like eating can cause serious complications in the esophagus and other organs. Reid was able to nurse but since then is fed through a Gastrostomy Tube or G-Tube.  This is also how many of his medicines are given.
 As Brian and Audra lived out the daily reality of having a child with EB, they became convinced that they had to try and do something to improve his quality of life. Their search led them to one of the smartest and most compassionate doctors in the world, Dr. Jakub Tolar.

Dr. Tolar sporting the Crawling for Reid gear.

Dr. Tolar sporting the Crawling for Reid gear.

The family meeting with Dr. Tolar in Minnesota.

The family meeting with Dr. Tolar in Minnesota.

 Dr. Tolar runs the stem cell institute at the University of Minnesota.  He and his team have developed a variety of stem cell treatments to both improve the quality of life for EB patients but more importantly, hopefully find a cure.  You can find more information on Dr. Tolar work on the “Finding a Cure” link at the top of the page.  The work they are doing could really change how all genetic disorders are treated.

Here is the family on their way to Minnesota to begin the process of preparing Reid (and Avery) for the bone marrow transplant.

Here is the family on their way to Minnesota to begin the process of preparing Reid (and Avery) for the bone marrow transplant.

 The experimental Bone Marrow Transplant is designed to give Reid healthy stem cells from his sister, Avery. The procedure is designed to help him begin to create Collagen VII, which he currently can’t produce. The procedure included some danger for both Avery and Reid, but the family was confident they were in good hands.

Avery had to be tested to ensure she was a good match for the procedure. Lucky for Reid she was and what a good sport she was about all the unpleasant medical procedures.

Avery had to be tested to ensure she was a good match for the procedure. Lucky for Reid she was and what a good sport she was about all the unpleasant medical procedures.

Reid then had to undergo a low dose of chemotherapy for 5 days and 1 day of radiation. These procedures were designed to kill the cells in Reid’s bone marrow.  This may sound counterintuitive, but even though Reid’s cells are damaged they still would probably want to fight with any new foreign cells coming into the body. By killing off his cells, it prepared the body to receive the healthy cells being donated from his sister Avery..

Reid on his last day of chemo but before he had a low dose of radiation.

Reid on his last day of chemo but before he had a low dose of radiation.

 Reid went through many changes after the chemotherapy and radiation.

Even a low dose was pretty rough.

Even a low dose was pretty rough.

Avery stem cell

Avery after they took bone marrow from her hip to harvest her stem cells.

Reid after the bone marrow transplant. Now the difficult waiting period begins.

Reid after the bone marrow transplant. Now the difficult waiting period begins.  During the next 6 months or so, Reid was monitored while his immune system was built back up. The also were watching his cell counts to see if the procedure was going to have lasting effects.

Audra was so amazing during this time. She stayed in Minnesota with Reid, basically quarantined as Reid couldn't be exposed to any germs. One of the strongest women on the planet to go through that alone.

Audra was so amazing during the 7 months she was in Minnesota. She was basically quarantined as Reid couldn’t be exposed to any germs. One of the strongest women on the planet to go through that alone.

Brian had the difficult task of leaving Audra and Reid, and returning home to take care of Avery and Barrett.  This was not easy while also trying to return to work.

Brian and Reid.

Brian and Reid.

The kids did get to visit mom on a couple of occasions.

The kids did get to visit mom on a couple of occasions.

 One of the problems with the bone marrow transplant in previous trials, the cell counts have looked good initially, but then dropped off.  Generally, the doctors want about 20% of Reid’s cells to be replaced by Avery’s cells to gain the benefits.  As in the past, Reid’s numbers began to drop so a second procedure was used to boost the cell counts. The approach of using multiple procedures to boost effects appears to be working.  At 1 year after the BMT plus the booster infusions, 40% of Reid’s cells are now from his sister’s stem cells.  Here is a picture that was taken not long after the BMT procedure the shows what that can mean for the strength of his skin.

Left is Reid's leg before BMT. The right is after.

Left is Reid’s leg before BMT. The right is after.

Life after BMT is better but still rough. Just learning to drink out of a soft sippy cup does damage.

Life after BMT is better but still a challenge. Just learning to drink out of a soft sippy cup does damage.

The one year biopsy procedure to check results was pretty tough on our little man.

The one year biopsy procedure to check results was pretty tough on our little man.

Still recovery is happening better then before.

Still recovery is happening better then before.

Just another day in the life or Reid 1 year post BMT.

Just another day in the life or Reid 1 year post BMT.

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