James Middleton has shared a touching tribute to his “incredible” goddaughter Anouk, who is battling a rare muscle disease.
The Princess of Wales’ younger brother, 37, last night praised his friends Mike and Sophia for raising awareness about spinal muscular atrophy (SMA).
Earlier this week, the couple spoke to MailOnline about their six-year-old daughter’s genetic condition which is slowly destroying her mobility.
Mike and Sophie shared their story to help the campaign to include SMA in newborn screening to improve early diagnosis.
The mother said: ‘I torture myself with the “what ifs?” If she had been tested at birth and she had been given the medication earlier, could that have changed her life?
Pictured: James Middleton appears on This Morning in February 2023. The Princess of Wales’s brother has shared an emotional tribute to his “incredible” goddaughter Anouk, who is battling a rare muscle disease.
Would you do better than now? She maybe she can jump, run and get up off the ground on her own.’
Last night, James, who recently became a father, shared the article with his 345,000 Instagram followers.
He wrote: “I’m so proud of Mike and Sophie for raising awareness about SMA and even prouder of my amazing goddaughter Anouk.”
James then tagged the charity ACE SMA to encourage his followers to “learn more” about what they can do to help.
It was in June 2019, when 15-month-old Anouk began walking around the house holding onto her walker, that the Howes first noticed something wasn’t right.
“He walked with his legs straight and never bent down to pick up anything,” Sophie recalls. “She couldn’t get up to stand either.”
Sophie took Anouk to the GP and a local physiotherapist twice and they both assured her everything was fine.
“They said there’s nothing to worry about, she’ll probably be slow or a bit lazy and by the time she’s two she’ll be fine,” Sophie says.
Then Sophie’s mother Caroline, who is a GP, noticed that Anouk’s crawling was slowing down.
Anouk Howes, six, with her mother Sophie, father Mike and brother Willem, who has been diagnosed with SMA, a genetic disease that affects the muscles and causes progressive atrophy and weakness.
Last night, James, who recently became a father, shared the article with his 345,000 Instagram followers.
‘When he could crawl up stairs before, he started using his head for balance. She raised her hands, then her head, then raised her body,” says Sophie.
Fortunately, Anouk had an appointment at the Nuffield Orthopedic Center in Oxford for July 2019, to address a completely different complaint.
Born with hip dysplasia, where the ball and socket joint of the hip does not form correctly, Anouk had to wear a harness as a baby and attended sessions with her physio until she was two.
At this routine visit, Sophie mentioned Anouk’s deteriorating mobility and the physiotherapist told her: “I have the slight concern that it could be something neurological.”
In the last five years treatments have been approved for use on the NHS that can stop the disease in its tracks. The problem is that they must be started within the first weeks, or even days, of life.
Symptoms usually appear between seven and 18 months of age, when children begin to need help standing or walking, and their arms and legs become weak. Anouk was around 15 months old when his parents noticed that something was wrong with Anouk.
Concerned, Sophie took Anouk to a private pediatric neurologist in London in September 2019, where her reflexes were assessed.
“The specialist said, ‘Without a blood test I can’t diagnose her, but I think she has spinal muscular atrophy,'” Sophie says.
“I didn’t know what SMA was, so I started Googling, which is scary because it’s a horrible condition.”
In October 2019, a blood test confirmed that Anouk had SMA type 2. Dr Anne-Marie Childs, consultant pediatric neurologist at Leeds Teaching Hospitals NHS Trust, says the disease is rare and doctors can spend their careers without ever seeing a case, so I don’t know what to pay attention to.
“That’s why it’s important to screen newborns,” he adds. “But any baby who is bright and alert but not moving or feeding, or who has an unusual pattern of breast movement, needs to be seen urgently by someone who has the knowledge and ability to detect a diagnosis of SMA.”
For a pilot study, launched in 2021 by the University of Oxford, SMA was added to the newborn blood test, and thousands of babies have been screened at birth in hospitals across the Thames Valley and elsewhere.
The aim was to generate evidence to persuade the UK NSC to recommend adding SMA to newborn blood screening.
The trial is ongoing but has already identified one baby who is now receiving immediate treatment for this condition.
James Middleton shared a sweet photo of his son Inigo, his wife Alizee (left) and their dogs watching him talk about his new book.
The 37-year-old businessman lost his cocker spaniel Ella (pictured) last year after spending 15 years together.
A spokesperson for the Department of Health and Social Care would only say: “The UK National Screening Committee is reviewing the case for newborn screening.”
Earlier this week, James He shared snapshots of his son and his dogs, accompanied by his wife Alizée Thevenet.
The couple welcomed Iñigo into the world last October, but James rarely shares photos of his son on social media.
In her latest post, which was taken from James’ family on a sunny day as they watched him read his new book about grief, he thanks his late dog, Ella, who inspired the book, for also giving him the family he always wanted.
The 37-year-old businessman, who lost his cocker spaniel Ella last year after spending 15 years together, titled his upcoming memoir: Meet Ella: The Dog Who Saved My Life.