Midland mom starts GoFundMe to buy bike for son with Angelman Syndrome

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Midland resident Weston Mejia, 4, plays in his living room on March 23, 2023 in Midland. Mejia has a genetic disorder called Angelman Syndrome, which affects his speech and balance.

Midland residents Weston Mejia, 4, and his mother Felicia Warner play on March 23, 2023 in Midland.

From left to right: Kristin Emeott, her grandsons Warner and Weston Mejia and their mother Felicia Warner pose in Warner's living room on March 23, 2023 in Midland.

Midland resident Warner Mejia (left), 6, plays with his brother, Weston on March 23, 2023 in Midland.

Furniture is tucked into the corner on Felicia Warner's home on March 23, 2023 in Midland. Her son, Weston Mejia, has Angelman Syndrome, which make him strong and prone to tipping over furniture

Midland residents Weston Mejia, 4, and his mother Felicia Warner play on March 23, 2023 in Midland.

Midland residents Weston Mejia, 4, and his mother Felicia Warner play on March 23, 2023 in Midland.

Midland resident Weston Mejia, 4, plays in his living room on March 23, 2023 in Midland.

About two years ago, Midland resident Felicia Warner was sent a YouTube video from a friend that showed a child with Angelman Syndrome, a rare genetic disorder. The friend sent this video because it reminded her of Warner's son.

When the child in the video started laughing, Warner started crying. She finally figured out what condition her son had.

"(The video) was exactly like my son. I had never seen anybody like my son in my life," Warner said. "The moment I saw the little girl, I knew he had Angelman syndrome."

After about a year of rigorous testing, her 4-year-old son Weston Mejia was diagnosed with Angelman in July 2021.

This syndrome hinders Weston's speech and balance, making it difficult for him to independently walk. His mother is fundraising for a specialized $5,000 tricycle to give him joy and the ability to ride around with the other neighborhood children this summer.

Angelman Syndrome comes in several variations, but Weston's version is a mutation of a single gene that makes him developmentally delayed, Warner said. This limits his speech, fine motor skills and balance. This syndrome is rare, effecting 1-in-20,000 people. For reference, 1-in-700 babies are born Down Syndrome according to the U.S. Centers for Disease Control and Prevention. Warner said Angelman Syndrome comes with children at birth, though the diagnosis usually comes later in life since it is commonly mistaken for autism and cerebral palsy.

"(Warner) has an autism diagnosis, but my mom gut told me it was not just autism," Warner said. "There were so many other symptoms that were not like autism. I knew it was something more. I kept pushing for more and more and more (testing)."

Weston's daily life is heavily affected by Angel Syndrome. For instance, Warner said he cannot use words to speak, since most people with Angelman Syndrome never developing the use of words. Eventually, she will have to get Weston an AAC device to help him communicate, which have buttons to convey messages like "I’m hungry" or "I’m tired."

That is not to say Weston cannot communicate at all. Warner said when he is hungry, he will crawl over to his activity chair where eats, climb up and lean on it to signal he wants food. When he wants to watch TV, he will find the remote, chews on the top and starts hitting buttons.

Walking and balance are challenges Weston faces. Angelman Syndrome stiffens his leg muscles. He needs to have support from a wall, a gait trainer, or someone's hand to walk. Otherwise, he crawls.

Walking into Warner's apartment, people may notice her dining room table and chairs tucked into a corner, with the chairs on their backs. Living room furniture like TV stands are also attached to the walls.

That is because Weston is strong - strong enough to break child drawer locks and he will only get stronger as he ages, Warner said. He tends to flip over furniture around the house as he navigates the apartment. Picture frames and other wall decorations need to be hung up high to avoid him from pulling them down as well.

Weston also has a habit of putting everything he can into his mouth and does not have a good perception of danger. This means she must put up gates going into the kitchen, her bedroom, and the bedroom of Weston's six-year-old brother, Warner Mejia, to keep him from dangers like choking on his brother's LEGO pieces.

"We always say it is not baby proof. It is not toddler proof. It is Weston proof," Warner said.

Sleep can also be a challenge for Weston. Until last year, he never slept through the night, Warner said. He would average about two hours of sleep in a 24-hour period, yet would still be full of energy going into school.

Warner said it is common for people with Angelman Syndrome to be sleep deprived. Melatonin and over-the-counter sleep aids did nothing for Weston. Since he is so young, doctors did not want to prescribe him sleep medication. She had to connect with a doctor that specializes with Angelman Syndrome and sleep to get him on medication. Which he gets more sleep nowadays, Weston can still wake after only a couple hours of sleep, even on medication.

Not everything with Weston is a challenge, Warner said, explaining that he maintains almost constant joy and laughter. This is common among those with Angelman Syndrome.

"I get told all the time, ‘His laugh is contagious. His joy is contagious,’" Warner said. "Once you meet him, you are like, ‘That just made my day so much better.’"

As a single mother, Warner receives a lot of help with Weston from her mother, Kristin Emeott. She added that her son Warner is her biggest helper, often helping her with Weston by grabbing diapers when she is changing Weston or pushing his stroller.

His brother also helps out Weston in other situations, like when at the playground. Whenever he makes a new friend, he will bring them over to his mom and brother and he say, "This is Weston, he has Angelman Syndrome. Say hi Weston!" His mom said he just wants other children to know about Weston.

Once while attending a science fair for his brother, Weston began laughing loudly while an announcer was speaking, and other children began staring. When his mom asked how he felt about Weston laughing, he said, "Well, that meant he (Weston) was happy, so that made me happy."

"I like to be a big brother and take care of him," Warner Mejia said.

Going in public or inside another building keeps Warner on her toes, watching and keeping him close by 24/7. She often takes him out in a specialized stroller that he will grow into.

Weston's day is usually full of school and various forms of therapy. Weston attends physical, speech, occupational, eating and applied behavior analysis therapies at Children's Therapy Corner in Midland. He also has physical, occupational, and speech therapies once or twice a week at school was well.

Weston was added to physical therapist Hannah Mithoefer's caseload about two years ago at Children's Therapy Corner. She had worked with people with Angelman Syndrome before, but never treated someone with it as a physical therapist. She primarily helps Weston with his postural control and balance when walking, which involves getting him symmetrical with his legs and core, strengthening his core muscles, and coordinating his muscle activity.

One goal for Weston is to be able to walk independently without support, Mithoefer said. This past Tuesday, he reached a big milestone in his physical therapy by taking five independent steps for the first time in his life. Weston stood there impressed with himself while the therapists and his mother started crying.

Mithoefer was never sure if Weston could walk on his own.

"It surprised us," Mithoefer said. "Kudos to Weston for working so hard because a lot of people do not have to think about walking, and he does."

It was during a specialty therapy session where Weston got to ride a bike for the first time, making him even happier than usual when riding. Not only does riding a bike act a form of therapy for him, he fell in love with riding it.

"He is moving on his own without help from somebody else," Warner said. "That is a huge thing because he wants to be independent."

However, these therapy sessions are not covered by insurance, since Angelman Syndrome is so rare, she said. Warner receives financial help from her family to pay for therapy.

Warner lives at an apartment complex with lots of other children who ride their bikes around it, including her son Warner. However, the type of bike he needs to play with them is not one his mom can stop by Meijer and buy for $100. Not only are they specially made with pedal/seat straps and a handle in the back so someone can help him steer, but these bikes cost about $5,000.

She recently set up a GoFundMe to raise this money for Weston's bike, which she hopes to get him by the start of summer break. This bike is built for him to grow into and will last him for a long time.

"I would love for him to get a bike because that is part of childhood," Warner said. "It is part of childhood to ride a bike."

As for Weston's future, his mom said people with Angelman Syndrome tend to have full life expectancies and will need some form of assistance throughout his daily life. She will also likely have to prepare for Weston to have seizures - 80% of people with Angelman Syndrome develop epilepsy.

Warner said she plans on at least staying in Michigan during his public-school career, since the state has public special education for students up to the age of 26. Weston is in his second year of preschool.

As for other ways to help people like Weston, both Warner and Mithoefer said simply showing kindness to Weston does a lot for him. Warner recalls once going to the top of an indoor playground and a bunch of kids began asking questions about Weston. They were being curious and not being rude, she said. She wishes more parents would encourage this because Weston not only loves interacting with other children, it also helps normalize people like Weston to other children.

"Some sort of interaction with him is all I want from people. Do not ignore him," Warner said. "Interact with him, and smile with him. I promise he will make your day better with just his smile."

You can find the donation page for Weston Mejia's bicycle at gofund.me/3caafec5.