Brandon Ramirez, 28, of Colonial Heights, has exceeded expectations with help from his mother and family

COLONIAL HEIGHTS Sitting in her dining room on a warm February afternoon, LaDonna DeStazio reflects on her familys journey that has led them to Colonial Heights. Her son, Brandon Ramirez, 28, sits beside her, confined to a special wheelchair. He was not expected to live past the age of 12.

It was emotionally hard, but never physically hard, said LaDonna DeStazio on having to care for her son. People used to say all the time gosh it must be so hard for you. You do what you do as a mom.

LaDonna has given Brandon round-the-clock care for many years of his life, as his condition has deteriorated.

He can use his voice sometimes, mentally hes all there, but physically he has declined, she said.

What Brandon Ramirez has is called 4H syndrome, a rare genetic disorder with only 40 known cases in the U.S. The name 4H is short for hypomyelination, hypogonadotropic hypogonadism, and hypodontia. According to the Leukodystrophy Resource and Research Foundation, hypomyelination means there is a lack of myelin in the central nervous system. Hypogonadotropic hypogonadism results in a lack of normal puberty development because the central nervous system is not working properly. Hypodontia means that not all teeth are present.

Symptoms of 4H include late walking, problems with balance and motor skills, and an absence of normal development during puberty. Due to the rarity of the syndrome, there is no known cure.

For the first decade of his life, doctors were unable to pinpoint Brandons disorder. LaDonna DeStazio first went to doctors in 1994 when Brandon was in kindergarten and he first started having tremors. Her family was living in Colorado at the time.

When we first took him to the doctors, they had no clue, said LaDonna. He was at the childrens hospital and they were doing all these tests. They said he had something called essential tremors.

When Brandon began struggling with his walking when he was 8, LaDonna took him back to the doctors.

At that point, thats when they said he had some form of vanishing white matter disease, said LaDonna.

Vanishing white matter refers to the deterioration of tissue in the brain, which is normally due to aging. Doctors told LaDonna that kids with that type of disease dont normally live past the age of 12. Despite the dire diagnosis, Brandon was still able to live a relatively normal childhood.

By the time he was 12, he really hadnt declined, said LaDonna. He was still able to ride a bike, his walking was fine. He did everything a normal kid could do, the only sign was really the gait when he walked.

At that point, when LaDonna took Brandon back to the doctors, they found no vanishing white matter. Doctors were again at a loss.

They were like We dont know what to tell you, we dont know what he has, said LaDonna. And at that point, I had done all this research, trying to figure out what the heck is going on with him, and was coming up with nothing. Nobody knew.

Brandon began to decline as he entered high school, as he had not properly gone through puberty due to the 4H. Despite his situation, Brandon was able to persevere with the help of his family and his mother, who attended school with him for the last three months before he graduated from Rangeview High School in Aurora, Colorado in 2007. Brandon was able to walk across the stage to receive his diploma. Brandon is proudly able to nod his head as his mother mentions that he had one of the highest SAT scores of all the students in his high school. Though despite the joy, he continued to worsen.

We were basically told in 2007 that he wouldnt make it, said LaDonna.

In 2008 after Brandon had declined to almost nothing according to LaDonna, she received an email from Dr. Adeline Vanderver of the Childrens National Health System in Washington D.C. Vanderver confirmed that the diagnosis that had eluded doctors was most likely 4H syndrome, and advised the family to relocate to the East Coast.

In the years after the diagnosis, Brandon was able to bounce back, even graduating from college with a degree in horticulture in 2009.

LaDonna having to move Brandon from Colorado coincided with her being introduced to Jeff DeStazio, who she met through a mutual friend. By then, LaDonna (who changed her last name from Ramirez) had been divorced from her first husband. Her other two children, Elizabeth and Anthony, are grown and still live in Colorado.

I really dont recall how it all happened. I needed to be on the East Coast: I basically called and was like Im coming to stay with you said LaDonna smiling. He was fresh off a divorce at the time, and I knew how to be a mom. So I would help him out with his girls.

LaDonna and Jeff were married in 2012. Along with Brandon, LaDonna and Jeff reside in their Colonial Heights home with Jeffs daughter Paige, who is 19. Jeffs other daughter Kylie is currently serving in the Marines.

The DeStazio household could certainly be described as unique. Two service dogs, Laychey and Bryndal, help Brandon with some of his day-to-day activities. Though the little puppies are not what you would normally tag as service dogs, with both of them being about a foot long and maybe 15 pounds. Brandons comfort kitties - Rizzie and Stash rest sleepily on his lap.

The DeStazios cant go out as much in recent years: LaDonna notes that car rides are a big thing, but the family still frequents occasional trips to goodwill and the mall. Brandon also enjoys watching the birds of local Buddy Waskey when he free-flies his Blue Throated Macaws. Paige DeStazio noted that she and Brandon often watch movies together.

I try to listen to music with him, and show him whats current, said Brandons cousin James Molica. Though its hard sometimes to tell what hes thinking.

Treating Brandon remains a challenge, as there is no set medication or treatment that works definitively for 4H.

A lot of it is still a guessing game, said LaDonna.

He has been taking testosterone and growth hormone on and off for many years. Brandon has also used a feeding tube at various times.

LaDonna also credits some Colonial Heights residents for assisting the family, as the ramp leading into the house and the stair chair that gets Brandon up the stairs were donated.

Despite the long road her family has taken, LaDonna firmly believes that the upbeat spirit they carry has led to Brandon reaching a point doctors never thought he would.

We chose to not let it be disruptive in our lives, said LaDonna. Not to let it change us as a family. We chose to focus on what he can do and not get depressed over the fact that oh Im not doing this.'

John Adam may be reached at jadam@progress-index.com or 804-722-5172.

Follow this link:
Family strength helps Brandon Ramirez persevere - Progress Index

Comments are closed.