A mother has shared what it’s like for her daughter to live with a rare developmental disorder suffered by actor Colin Farrell’s son.
A TikTok user named Ashluv shares videos detailing day-to-day life for her and her teenage daughter, Makayla.
Makayla, 16, was born with Angelman syndrome, a rare genetic disorder that occurs in about one in 15,000 births across the world.
The disorder, which causes developmental delays, has left the teenager unable to talk, and she just learned to walk about a year ago.
However, her mother, who has amassed over 1.8million followers on TikTok, calls Angelman ‘a very happy syndrome,’ and has said that her daughter has beaten the odds by learning new skills every day.
It’s the same condition actor Colin Farrell revealed this week that his 20-year-old son, James, has, leading him to take his first steps just weeks ago.
A TikTok user named Ashluv shares videos of her 16-year-old daughter, Makayla, who has the genetic condition Angelman syndrome
This week, actor Colin Farrell revealed his 20-year-old son, James, has Angelman syndrome and took his first steps just a few weeks ago
Angelman syndrome is a genetic disorder caused when the UBE3A gene, which comes from the mother, deletes or mutates.
This impacts the nervous system and leads to cognitive, speech, and motor delays, as well as trouble walking or balancing.
Parents may notice their children failing to meet milestones such as lifting up their head, walking, or swallowing, followed by seizures later in childhood.
People with the condition also tend to seem happy and bubbly most of the time, which Makayla’s mother has noted is true for the teen.
However, Angelman syndrome causes her to get overwhelmed with feelings and confused. In several videos, Makayla is seen laughing and crying at the same time.
‘Makayla is nonverbal and has Angelman syndrome, which is a very happy syndrome, but sometimes my girl gets so emotional,’ Ashluv said in one video, where Makayla is trying to decide what she wants to eat.
‘But apparently while looking for food, she forgets she’s crying and continues crying when she can’t find what she wants to eat.’
She is also very attached to her father and suffers separation anxiety when he leaves. ‘This man is everything to her,’ Ashluv said in another video posted last month. ‘She was so upset with Dad because he got off at the store without her.’
‘The way she was so emotional about him, he can never leave her.’
People with Angelman syndrome also may have symptoms similar to autism, such as flapping their hands and being restless or hyperactive.
About 500,000 people worldwide have Angelman syndrome. Patients have the same life expectancy as the average person, but they require a lifetime of specialized care to help them with basic tasks.
However, some patients can pick up skills even as teens or adults. Makayla and Farrell’s son, James, for example, both learned to walk within the last year.
Makayla frequently gets so excired and overwhelmed that she ends up laughing and crying at the same time. Like James, she also just learned how to walk recently.
‘I want the world to be kind to James. I want the world to treat him with kindness and respect,’ Farrell, 48, told People
In a video posted last month, Ashluv showed her daughter walking independently through the house, something she never thought she would do. ‘She used to be the girl on the kitchen floor that couldn’t even stand up alone,’ Ashluv said.
‘Now she’s walking all around the house all alone like she didn’t just learn to walk last year when doctors told us she would never walk.’
This week, Farrell revealed his son’s diagnosis in an interview with People. ‘I want the world to be kind to James. I want the world to treat him with kindness and respect,’ Farrell, 48, said.
Colin shared that James ‘has worked so hard all his life, so hard’ at learning ‘repetition’ and ‘balance’ and improving his ‘jerky gait.’
He recalled: ‘When he started feeding himself for the first time, his face looks like a Jackson Pollock by the end of it. But he gets it in, he feeds himself beautifully. I’m proud of him every day, because I just think he’s magic.’
‘He took his first steps about six weeks ago, and it was four years in the making. It was incredibly emotional. There wasn’t a dry eye in the house.’
