Nemours Children Health in Deptford received a $6,000 donation from the Gaudlap family on June 20, as thanks for the institute’s help with their 7-year-old son, Raymond.
“The family is very appreciative for the diagnosis/services their son Raymond Gaudlap has received at Nemours,” said the institute’s LuAnn Gardiner. “… This family works so hard all year long to raise money for us and (we) would love to get them some recognition for their commitment to enhance the patient/family experience.”
Raymond, who also celebrated his birthday as the donation was made, was born in 2016 in North Carolina, and showed early signs that he wasn’t proceeding developmentally.
“We ended up back here (in New Jersey) because of the medical care not being good down there, and we got established with Nemours pretty much right away,” said the family matriarch, Alexandra. “He had a global developmental delay from the beginning.”
While Raymond was initially diagnosed with cerebral palsy in 2018, his mother had doubts. She eventually contacted the undiagnosed disease program at the National Institute of Health in Bethesda, Maryland, where doctors reran Raymond’s genetic panel. The result showed he had a VAMP2 gene variant.
VAMP2 stands for Vesicle-Associated Membrane Protein 2, which is encoded by the VAMP2 gene and is involved in synaptic transmission, according to VAMP2.org, It is critical to the proper functioning of neurotransmission in the brain. Symptoms of the variant include seizures, developmental delays and vision and hearing problems.
The VAMP2 gene variant is extremely rare, affecting only about 20 people worldwide. Alexandra is forming her own charity foundation, the Raging Raymond Foundation, to help others with the same condition and their families,
“It’s been hard,” she acknowledged. “But I just kind of do what I have to do. The last year or so forming the foundation has been a grieving process. I’m grieving more than I thought I was, and it’s hard to watch your kid struggle and battle to give him the care that he needs and not have the money …
“But at the end of the day, he (Raymond) has proven so many people wrong and continues to amaze me every day. “… He’s happy as can be, and it just means so much. And it’s made it easier on the hard days.”
