After being told he would not make it to his first birthday, little Blake Grice is about to celebrate his second.
The son of Jason and Beth Grice, Blake is also one of the three children born with RCDP, otherwise known as rhizomelic chondrodysplasia punctata, to be able eat without the use of a feeding tube, the parents say. Worldwide there are about 100 cases.
And there is hope that he will continue to advance. Jason said that next year they plan to start a treatment utilizing a new clinical drug that could help him with cognitive ability and his immune system.
Through the treatment, within a year the couple expects him to be able to say “mom” and “dad.” He is already learning to crawl using his head and legs, Jason said.
Blake’s condition is a form of dwarfism that is often terminal. Many don’t live to 10-years-old. While he is approaching his second birthday, his appearance is that of an infant, who still needs to be bottle fed, and transported via a special stroller.
Blake participates in physical therapy sessions three times per week to help him be able to move his arms and legs more effectively. Through that treatment, he’s now able to bring his hands to his mouth.
Other medical conditions overcome by Blake include heart surgery to repair a hole he’s had since birth and surgery to repair eye nerve damage. He now wears contact lenses to correct his vision.
Blake’s story has drawn attention from the community. For Blake’s first birthday the couple invited 30 people, but about 100 showed.
“The people in the community are supportive,” Beth said.
This year, they plan to hold a Mickey Mouse themed party at Blake’s grandparent’s house, and they are preparing for a large crowd.
Jason’s employer, Walgreens, is also pitching in. Recently, the company gave a donation to Rhizo Kids International, and donated water and food that the family brought to a recent Rhizo conference to be provided to other conference participants. The conference is a chance for all parents of children diagnosed with RCDP to learn about emerging treatments, where specialists teach parents about proper feeding techniques and parents can get answers to specific questions.
And the assistance does not appear to be waning. Jason said that donations have been coming from across the nation. At times the couple will come home to find packages from people they never heard of, and some they have heard of but never met. Jason said that NHL player John Carlson with the Washington Capitals sent the family Christmas presents this past year.
“We never know what’s going to be on the doorstep when we come home,” Jason said.
To donate to the Grice family at www.gofundme.com/BlakeGrice or learn more at the family’s Facebook page at Hope For Blake Michael Grice.