Nicholas was born January 6, 2006 with a rare genetic disorder called TAR Syndrome or TARS for short.  This stands for Thrombocytopenia, Absent Radius Syndrome.  Thrombocytopenia is a low platelet count.  Normal platelet counts are 120,000 and above and Nicholas was born at 5,000.  He is missing the radius (long bone) in his arms bilaterally and his hands were very clubbed at birth.  He was also born with his foot and ankle attached at his femur with no tibia, fibula or knee in his left leg.  At the time of Nicholas’ birth there were approximately 250 known cases in the United states.

We were made aware that Nicholas had issues at our 19-week ultrasound, but no one could tell us exactly what it was.  We had to wait until he was born for him to be diagnosed.  As luck, fate or God would have it, Nicholas was born at Loyola University Medical Center where the pediatric hematologist/oncologist was already treating 2 children with this disorder so he was diagnosed within 12 hours of his birth and rushed to the NICU.

In the NiCU he was hooked up to monitors and a broviac line and was receiving platelet infusions every few days.  We took him home a week later with weekly appointments to the chemo center for infusions. After having him home a few days he was very ill and was taken back to Loyola.  The thought was that he had a malrotation in his bowel which might require surgery. Quite dangerous for a 9-day-old infant with blood issues.  He was flown by helicopter to Children’s Memorial Hospital to be evaluated.  After he was seen by a group of doctors, it was determined that he was allergic to the soy formula that he had been on.  He was put on a feeding tube of Neocate and they managed the infection over a period of just over a week.  Nicholas was then transferred back to Loyola NICU where he spent 2 more weeks. His time in the NICU was spent being monitored and cared for as well as him giving the Occupational Therapists a very hard time when they tried to work with his hands. 

After we had him home, weekly visits to the Hematologist and the Chemo Center at Loyola were required.  His first procedure was to have a broviac line placed in his chest for blood draws as he had no access points for traditional IV’s.  That was surgery number 1.  We were taught to care for the line in his chest at home in a crash course from a home care nurse.

At 4 months, old we had an accident regarding his car seat on a shopping cart.  As I was unloading the cart, the car seat toppled and landed face down.  The car seat did its job but Nicholas’ head came forward and hit the floor which caused a small skull fracture and a brain bleed.  Off to the hospital again and Nicholas’ second ride on Loyola Life Star.  He was treated for the fracture and the bleed and then ended up with an infection in his line.   We were there 12 days.

Several line infections later, at our insistence, Nicholas had his second surgery at 8 months old to place a port o Cath under his skin for blood draws and infusions and to control blood infections.  In the meantime, we are still at the hospital bi-weekly for blood draws and/or platelet infusions.

At 19 months, old Nicholas had his 3rd surgery to amputate his left foot and ankle.  This decision was made to make him ambulatory and allow him the option to walk rather than spend his whole life in a wheelchair.  He was fitted for his first prosthetic at the age of 2.  In physical therapy, we taught him to fall before we taught him to walk as due to his small arms, he did not have the reflex to block the fall with his hands out in front of him.  He finally walked independently at 3 years old.

Beginning at 5 years old the surgeries on his arms began.  These consisted of 4 total surgeries, 2 on each arm.  The first surgery was to place a fixator with pins into the Ulna that we turned daily to stimulate growth.  The 2nd surgery was to remove the fixator and centralize his hands on his ulna. 

At 8 years old his right knee was beginning to bow due to the pressure he was placing on it.  A screw and a plate were placed in that knee and he had it removed about 6 months ago. 

In total Nicholas has had 12 surgeries in his 11 years.   Daily he struggles with mobility, reaching, small motor skills, self-care things such as showering and dressing.  He has some adaptive products which assist with some of these things and he has adapted to his different abilities well.  He attends public school, is involved in Boy Scouts and plays drums in the band.  When the weather cooperates, he enjoys being outside with his friends, riding his adaptive bicycle and playing with Nerf Guns.  With all his difficulties, Nicholas is a well-adjusted, generally happy typical 5th grader.

We have recently been accepted as a client with the SITS Foundation which is an organization that specially trains service dogs to assist with things like mobility, dressing, safety and reaching for things.  These dogs go through approximately 18 months of specialized training to assist their clients.

It is our hope and prayer that this dog gives Nicholas not only the assistance he needs, but the confidence to journey out a little farther and try more new things.