Family Life, Special Needs

Jayden’s Journey: Angelman Syndrome and the Fight for a Well-Deserved Life

Amanda and Jared Williams were excited to welcome their firstborn, Jayden, on November 11, 2010. Weighing six pounds and three ounces, he seemed perfectly healthy. When he turned one month old, he was diagnosed with failure to thrive. He was unable to get back up to his birth weight even when more calories were added to his diet by mixing formula with breast milk. He was hospitalized overnight and continued to be less than 5 percent on his charts through infancy. Despite all his parents’ efforts, it seemed that Jayden had an uphill battle to fight. Amanda knew something wasn’t right, and she was more than willing to advocate for him and his health at every appointment.

“He was not meeting any milestones as a baby. He didn’t roll over, crawl, sit up, babble, hold his own bottles, or so on. I brought my concerns up to the pediatrician multiple times and she just kept saying it was a global developmental delay. She did set us with Early Steps around 10 months old. There, the wonderful physical therapist and I were talking, and she suggested I get a second opinion,” says Williams.

Frustrated with her original pediatrician’s lack of answers and concern, she sought out a second opinion from Dr. LeBlanc. His suggestion was to visit a neurologist and a geneticist, believing Jayden to either have Fragile X Syndrome, a genetic condition helmed by intellectual and cognitive impairment, or Angelman Syndrome, an answer to why Jayden was developmentally delayed. After genetic testing began, the family was on their way to get an MRI at Ochsner Medical Center when an unexpected call from the geneticist derailed the trip.

“He said that my son has Angelman Syndrome, or Prader-Willi Syndrome. I had my husband pull over in the first parking lot we could find. I was sobbing, and the geneticist asked if he could call me back at a better time when I could pull myself together. I stopped sobbing and listened to what he was saying. He mentioned a deletion on his 15th chromosome and told me he was severely mentally delayed, and no amount of therapy would help. It was the worst moment of my life, and I will never forget the way I felt. I didn’t know what to expect or if my child would live or die. I wouldn’t wish it on anyone,” shares Williams.

With additional testing, it was confirmed that Jayden had Angelman Syndrome (AS), a neurogenetic disorder that affects the nervous system causing significant developmental delay, speech impairment, and troubles with balance. People with this disorder are often smiling and giggling, possessing excitable personalities. Epilepsy and seizures are also common with this disorder, and Jayden’s experience was no exception, having suffered seizures since he was 15 months old, in addition to being diagnosed with Lennox Gastaut Syndrome, a type of epilepsy.

With any diagnosis of a child, sadness and guilt is inevitable, and adjusting to life marred with these emotions was anything but easy. The Williams family found that they had to grieve the child they thought they would have and the life they envisioned Jayden would lead. It was a huge adjustment with so many emotions and feelings. Amanda herself suffered with an insurmountable guilt when she discovered that the type of gene deletion Jayden had was from a maternal deletion. When looking back, Amanda is thankful she and Jared didn’t get Jayden’s diagnosis until he was almost one. The couple were able to love their child as he is and mostly enjoy his first year of life without worrying over the future.

The Williams family were never alone in their fight to give Jayden the life he deserves. Enveloped in the love of their family, friends, and the community, they have enriched their lives and moved towards brighter days. To combat the effects of Angelman Syndrome, Jayden has been in therapy since he was 10 months old. He did speech, occupational, physical, and vision therapies through Early Steps until the age of three. He has also done outpatient therapies at the Children’s Hospital in New Orleans. He is currently receiving physical and occupational therapies at Innovative Suit Therapy and speech therapy through Parker Speech & Language.

Today, Jayden is 11 years old and is joined by two brothers, 5-year-old Reid, and 23-month-old Parker. Now residing in Ponchatoula, Amanda works as a hairstylist, and her husband is a prime tech for AT&T. Their days are filled with entertaining the boys and playing with their two well-loved furry friends, a dachshund and a standard goldendoodle.

Each day brings something new, especially for Jayden. His mother describes him as a loving and spirited child. He is able to walk short distances without assistance and is excelling in all of his therapies. Every day he works hard to improve and does it all with a smile on his face.

Jayden is never lacking in things to do. He enjoys swimming, music, playing outside, jumping on his trampoline, swinging, and going places. He is very friendly and very much a people person, as even simply being around people makes him excited. Long-distance travel is also not out of the question. In addition to their day trips to parks, a recent vacation to Disney World and Universal Studios in Orlando, Florida brought a smile to each of the boys’ faces and a host of awesome, unforgettable memories for the whole family.

“Jayden loves going on vacation. His favorite rides were Soarin’ Around the World in Epcot, Millennium Falcon: Smugglers Run in Hollywood Studios, Peter Pan’s Flight in Magic Kingdom, and E.T. Adventure at Universal Studios,” says Williams.

Surrounded by the love and support of his community, Jayden’s opportunities are endless. He just received his first communication device through Tobii Dynavox, a software development company that specializes in speech generating devices. His family is so excited for him to finally have a voice and to be able to communicate his exact needs to them. Additionally, his wonderful community of supporters helped raise funds for Jayden’s therapy, and most recently, he received his very own adaptive bike, thanks to Riley’s Bikes, a nonprofit organization in Slidell that seeks to help kids like Jayden cruise the streets with bicycles built to meet their unique mobility needs.

Nothing is more important than that sense of community, and to foster it and better document Jayden’s life, Amanda started an online blog and a Facebook page called Hope for Jayden where she would update family and friends on the ins and outs of the family’s budding new life. While her life is a little too busy for frequent updates, she recommends supporting organizations and foundations she is a member of like The Foundation for Angelman Syndrome Therapeutics and The Angelman Syndrome Foundation that post information about the syndrome and put donations towards supporting families and finding a cure for Angelman Syndrome. With recent discoveries and advancements in technology that will help develop a cure, more permanent relief may be available for children like Jayden.

Jayden and his family have overcome every obstacle that has stood in their way. From a baby who was struggling to maintain weight and thrive to a young boy who lives each day and eats up every new, exciting experience with gusto, Jayden has come a long way.

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