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13
Jun

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“Honestly, when Wyatt was born, we didn’t know if he would live four days,” Wyatt’s mum, Amanda Hanley, told the Children’s Mercy Hospital in Kansas where her son was treated, “and now he’s 4 years old,”

The world’s rarest illness?

Wyatt was born fighting for his life due to a rare blood disorder called TPI, or Triosephosphate isomerase deficiency. The disorder was only identified in 1964 and since then just 100 patients have been diagnosed worldwide. In fact, Wyatt’s condition is so rare that it wasn’t until he was nearly a year old that doctors were able to confirm his diagnosis.

People with TPI are short of red blood cells and suffer from anaemia, which can lead to neurological problems, infections, and muscle weakness, ultimately affecting the sufferer’s breathing and heart function. Only four people with TPI are living today, and Wyatt is one of those four.

Anaemia and a “Shrek like” skin colour

“Within a few hours of Wyatt’s birth, he turned a ‘Shrek-like’ shade of green,” Amanda recalled. Having tested Wyatt’s blood, doctors advised Amanda that her son was suffering from hemolytic anaemia, a blood disorder that causes the premature destruction of red blood cells, and can cause the “greenish” look. Although the experts at Children’s Mercy Hospital were able to treat Wyatt for anaemia, restoring a more natural flesh tone, he was still “gravely ill”.

A diagnosis at last

From the beginning, Wyatt’s doctors knew that the baby had a blood disorder, but “pinpointing the specific condition was a process of elimination”. Amanda travelled every two weeks to Children’s Mercy in hope of an answer. It took nearly a year for doctors to confirm that Wyatt had inherited TPI from his parents, both of whom were unsuspecting carriers of the illness.

Bone marrow transplant failure

Dr Myers, Wyatt’s doctor at Children’s Mercy, explained to the family that although  “Bone marrow transplant can cure certain forms of hemolytic anaemia… the risks of  transplant often outweigh the potential benefit.” However, Wyatt’s anaemia, unlike other cases of hemolytic anaemia, was likely to progress to neurodegenerative disease and heart failure, eventually leading to death. “This is such a rare condition,” said Dr Myers, “we couldn’t guarantee a transplant would work. There is also no published record of bone marrow transplant for TPI deficiency. This was new territory.” But, after careful consideration, Wyatt’s family agreed this was his best chance for long-term survival.

In November 2014, Wyatt received chemotherapy and his first bone marrow transplant. Tragically, just a few weeks later it was evident that Wyatt’s transplant was failing.

Wyatt falls dangerously ill

In March 2015, Wyatt received a second transplant, this time of peripheral blood cells, but again, Wyatt’s body rejected the transplant. With his immune system now weakened by chemotherapy, Wyatt got very ill and was admitted to the Children’s Mercy Pediatric Intensive Care Unit with a life-threatening infection. After getting the infection under control, Dr. Myers recommended a different option for Wyatt, a transplant using cord blood.

Cord blood transplant and a happy ending

On May 5, 2015, Wyatt’s family and friends prayed for the third time, and their prayers were answered. “Wyatt’s body accepted the cord blood transplant,” Amanda said.

Finally, Wyatt was on the road to recovery. Four months after being admitted to the hospital, he was ready to head home. Although Wyatt still has a complex medical condition, Amanda said Wyatt’s thriving. Aged four, Wyatt is a  preschooler who loves popcorn and ice cream, fishing with his family, and talking to his mum on Facetime every lunchtime.

“My hope” said Dr Myers, “is that we stabilized a disease process that was going to take Wyatt from his family, “and that he will have a good quality of life.” According to Amanda, he certainly does:

“He doesn’t let anything hold him down—he’s an amazing kid.”

Find out more about Cord blood

Cord blood stem cells are young and flexible cells, found in the baby’s umbilical cord. These cells can be stored after birth, in case someone like Wyatt should ever need them. To find out more about cord blood storage, click here.

Sources

Children’s Mercy Oncologist Treats Rare Blood Disorder with Novel BMT Approach

Genetic and Rare Disease Information Centre