A mother has revealed her anguish after her teenage son’s battle with ‘childhood Alzheimer’s’ has robbed him of his ability to speak.
Levi Ormeroid, 19, from Milwaukee, Wisconsin, was a healthy toddler, able to ride a bike, colour in pictures, count to 10 and sing along to his favourite song Jessie’s Girl by Rick Springfield.
Yet, Sanfilippo Syndrome gradually robbed Mr Ormeroid, who has the mental age of an 18-month-old, of his ability to dress himself at age eight, hold a pencil at 10, eat solid foods at 11 and speak at 17.
Now when he hears his favourite tune, his eyes light up but he is unable to make a sound.
Mr Ormeroid’s mother Christi Ormeroid, 43, who is his carer, said: ‘He has this look in his eyes that he is mentally singing along. It’s heartbreaking.
‘This disease is robbing him and others from having a typical life.’
Mr Ormeroid’s family are speaking out to encourage more research into the syndrome and raise $10,000 towards the cause.
Sanfilippo Syndrome, which causes similar symptoms to Alzheimer’s, affects one in 70,000 children in the US, with sufferers typically not living beyond 15.
Levi Ormeroid’s battle with ‘childhood Alzheimer’s’ has left him unable to speak at 19 years old
His sister Logan, 23, (pictured) aims to raise $100,000 towards the syndrome’s research
His mother Christi Ormeroid, 43, (pictured with her son and their family on the day he graduated from secondary school in June 2017) says his disorder is ‘heartbreaking’
WHAT IS SANFILIPPO SYNDROME?
Sanfilippo syndrome, also known as Mucopolysaccharidosis type III, is a rare disease that occurs when the body is missing, or has insufficient amount of, certain enzymes.
These enzymes break down long chains of sugar molecules.
As a result, these molecules build up in different parts of the body.
Sanfilippo syndrome is an inherited disorder.
Symptoms often appear after the first year of life.
Sufferers’ learning abilities tend to decline between two and six years old.
Other symptoms include:
- Behavioural problems
- Chronic diarrhoea
- Heavy eyebrows that meet in the middle
- Stiff limbs that do not fully extend
- Vision and hearing loss
- Walking problems
There is no cure.
Treatment focuses on managing symptoms.
Most sufferers do not live beyond their teenage years due to complications.
These include blindness, an inability to care for themselves, seizures and progressive nerve damage.
Source: US National Library of Medicine
‘Everything you wish your kid could do is gone’
Speaking of her son’s childhood, Ms Ormeroid, said: ‘Levi was just like any other child. He was riding his bike, playing sports like soccer and he was potty trained.
‘He was behind on his speech but was still talking in sentences.
‘By the time he was four he had started losing his words slowly and was down to two-word sentences.
‘Everybody said, “He’s a boy, they learn slower than girls.”
‘I would tell myself I was overreacting but then the next day it was like, “Something isn’t right.”
After six years of tests and appointments, Mr Ormeroid was finally diagnosed at 10 years old.
Ms Ormeroid, who lives with her husband Jason, 44, an engineering programme manager, said: ‘The worst day of my life was in 2009 when we found out it was Sanfilippo Syndrome.
‘I just remember I started crying and was in my own little world. It was like a dream and I couldn’t wake up.
‘Everything you wish your kid could do is gone. It was like being stabbed in the heart.
‘Levi’s favorite song is Jessie’s Girl by Rick Springfield. He would sing along and just be so happy.
‘Now when he hears the song he still lights up and you can see the spark in his eyes but he is unable to sing along.’
When Mr Ormeroid hears his favourite song, his eyes light up, but he is unable to sing along
Mr Ormeroid (pictured in 2007 when he won first place at a Cubs Scout award) was not diagnosed until 2009 despite his mother noticing he was losing the ability to speak
Mr Ormeroid (pictured playing football at five) was a healthy youngster until he lost the ability to dress himself at age eight and hold a pencil at 10, leading to numerous doctor tests
Although a healthy child (pictured in 2007) he now has the mental age of a 18-month-old
His mother finds it upsetting that Mr Ormeroid (pictured at six) will miss out on a ‘typical life’
‘Everything is there in his mind but it just won’t come out’
Speaking of how Mr Ormeroid’s condition has impacted her, his mother said: ‘It is like Alzheimer’s. It is like everything is there in his mind but it just won’t come out – he can’t express himself.
‘As a mom, it is hard. I felt hate at first because I would see friends whose boys were Levi’s age and I would see them getting driving lessens or excelling in things.
‘It has been challenge but mostly out of this whole thing, Levi has taught us so much.
‘I look at life differently now and never take anything for granted.’
Speaking of her desire to raise awareness of the disorder, Ms Ormeroid added: ‘It’s important to me and others to find a cure now for our children and for the future undiagnosed children.
‘No parent should have to watch their child lose skills they once learned and suffer.
‘No parent should have to worry when this disease is going to take their child from them.
‘We just need to find a cure. We are so rare with not a large number of patients so the drug companies don’t profit.
‘We need funding to support our gene therapy and clinical trials. We all need to do more.’
Mr Ormeroid’s sister Logan, 23, is attempting to climb Pico de Orizaba, the highest mountain in Mexico, to raise funds for the Team Sanfilippo Foundation.
The expeditation, which began last Sunday, will take six days.
His mother says his condition leaves Mr Ormeroid (pictured when he was youngster) stuck in his own mind, unable to ‘express himself’ or ‘excel’ at thing like his healthy peers
Mr Ormeroid’s regression means he has to ride a three-wheel bike to ensure his safety
Mr Ormeroid (pictured left) at his first annual Tee Off Fore a Cure event in 2014