Blake’s Fight: Local family battling rare disease

Published 7:00 am Wednesday, October 28, 2015

rare disease: Six-month old Blake Grice suffers from RCDP.  Photo by Cassandra Favre

rare disease: Six-month old Blake Grice suffers from RCDP.
Photo by Cassandra Favre

For three years, Jason and Beth Grice of Picayune dreamed of having children.
This year, the couple who fell in love in high school, realized their dream with the birth of their son Blake.
However, along with the normal challenges of new parenthood, the Grices also faced something far greater and scarier when Blake was diagnosed with RCDP, a rare terminal form of dwarfism, Beth said.
The couple married in 2007 and began fertility treatments three years ago. Beth was diagnosed with a hormone deficiency, which complicated their efforts to conceive.
“We were given a donor embryo,” Beth said. “He is our miracle baby, three years in the making.”
Although all of her ultrasounds were positive, when Blake was born, doctors believed he had dwarfism because his arms and leg were shorter than normal infants.
He had trouble breathing and was transferred to Forrest General Hospital and finally Children’s Hospital in New Orleans, where a geneticist told the doctors Blake exhibited symptoms of RCDP.
About 42 children have been diagnosed in the United States and less than 100 worldwide, Beth said. She also believes Blake may be the only child in Mississippi diagnosed with RCDP.
Along with shortened limbs, symptoms of RCDP include respiratory problems, stippling or spotty calcium deposits, cataracts and GI issues, Beth said. Blake was also born with a hole in his heart.
“We were devastated,” Beth said. “The doctors told us to spend as much time as possible with him. Most children diagnosed with RCDP don’t make it past their first year and some won’t make it past a decade.”
Blake also has mild hearing loss and underwent cataract removal at four months. He now wears contacts to correct his vision.
Due to Blake’s condition and care, Beth resigned from her job to take care of him full time.
“He is an early riser,” she said. “He takes several different medications each morning after he eats. He must sit up while his medicine settles due to reflux. He loves watching Scooby-Doo.”
Blake takes three heart medications as well as, Pepcid, sodium chloride and medication for nerve pain, his mother said.
During the day he wears hand splints for thumb abduction because he draws in his hands in. This helps keep them in a more functional position.
Blake and his mom also play during tummy time, where she tries to get him to interact with different toys whiles he lies on a blanket.
“He’s a big Mozart fan and loves listening to music,” Beth said. “Some afternoons, he spends time with his great-grandmother.”
Once a week, occupational therapist Amanda Koch visits the Grice home to perform Blake’s therapy, which includes movement of all his extremities.
“He has gained a lot of range of motion,” Koch said. “We also work on his neck strength.”
Since therapy, Beth said Blake can now swing his body, raise his arms a bit and is not curling his fingers as often.
Blake spends the majority of time at home, so as not to contract germs, Beth said, as it takes him longer to recover from illness.
About once a month, Blake is seen by a cardiologist, geneticist, orthopedist and pediatrician. He weighed six pounds at birth and now weighs nine pounds at six months.
“Most babies with RCDP have a feeding tube, but he is eating without one,” Beth said. “He’s on the upper end of the scale. We have recently started him on solid foods with a spoon.”
In addition to cataract removal, Blake has also undergone two hernia repairs and a nissen, a procedure to help his reflux.
This November, Blake will undergo open-heart surgery to fix the hole his heart. If not done soon, his cardiologist is worried about the effect on his lungs.
“We’re really nervous, but he’ll do fine,” Beth said. “He’s pulled through all the other surgeries.”
As soon at the Grices heard about RCDP, they immediately began researching and discovered Rhizokids International and the group’s Facebook page. There’s a support group for families affected by the disease and Beth said they are real supportive, even calling and messaging to answer the couple’s questions and check on Blake’s health.
“It’s like a close-knit family,” she said. “Most of them know more about RCDP than his doctors. For most of his doctors, this is the first time they’ve seen a case of it.”
Beth also said her and Jason’s families have been supportive and help out both morally and financially. Since they know how to administer Blake’s medicine, they can babysit him, she said.
Next year, the Grices are hoping Blake will be accepted into a clinical trial, to raise his plasmalogen levels, which may help his mental development, Beth said.
In an effort to offset medical costs, a GoFundMe account has been established at People can follow Blake’s journey on the Facebook page Hope For Blake Michael Grice. The family will also have a booth at the Picayune Fall Street Festival, where they will be handing out information about RCDP. Half of the proceeds raised will be donated to the RhizoKids Fund for clinical trials and the other half to Blake’s medical fund.
Despite the diagnosis, Beth wants her son to live as normal a life as possible.
“We want him to be happy,” she said. “We don’t treat him any differently and don’t let anyone else. Even though his mouth movements are delayed, we got a laugh the other day and he is starting to smile.”

Sign up for our daily email newsletter

Get the latest news sent to your inbox