'Little soldier' Drew fighting extremely rare muscle condition
- Credit: Mick Howes
To his family, this bubbly 11-month-old baby boy is their "little soldier."
But behind the smiles, brave Drew Denny is battling an extremely rare muscle-wasting condition.
Drew was born on July 23 last year and was diagnosed with Duchenne Muscular Dystrophy (DMD) on Boxing Day.
To be diagnosed with this genetic disease that causes muscle weakness and wasting is very rare, but to be informed that your five-month-old baby boy has DMD is even rarer - as the symptoms are not usually visible until boys are aged between three and five.
For Drew's parents Molly Pitts, 20, and Zak Denny, 27, it has been a traumatic time - made even tougher during a global pandemic - as they come to terms with the diagnosis.
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And now the couple, from south Lowestoft are determined to help their much-loved baby boy's plight - while raising funds and awareness of DMD, which is classified as a rare disease.
They've set up a new support group on Facebook entitled 'Living with DMD #DrewsWay' which is Norfolk and Suffolk based for everyone that wants to learn and support those caring for, or living with, Duchenne Muscular Dystrophy.
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And they are holding a sponsored walk next month, to help raise funds and awareness of the Action Duchenne charity - a national charity dedicated to funding research and supporting those living with DMD.
The 'Our first steps!' walk on July 31 - totalling seven miles from the South Pier in Lowestoft to Kessingland and back - will see family, friends and supporters stepping out just a few days after Drew's first birthday.
Ms Pitts said: "After four or five months of many checks and blood tests we were told Drew's diagnosis on Boxing Day.
"It's a muscle-wasting disease where the symptoms are not usually visible until the age of three to five.
"Everything was fine with the pregnancy but when he was around one month old we knew there was something wrong.
"He was sleepy all the time, and I rang 111 for advice and while we were on the phone the operator heard the noises he was making in his sleep and called for an ambulance there and then."
They were rushed to hospital, and Drew's temperature was high - leading to months of appointments, checks and blood tests in the midst of the coronavirus crisis.
With the rare condition mainly just affecting boys, for those with DMD, the fault on the gene means that they cannot produce dystrophin - a protein that protects muscles.
Without dystrophin, muscles get damaged easier as the muscle strength and function is weakened. With around 2,500 patients in the UK and an estimated 300,000 worldwide, it has been a difficult time for the whole family.
Drew's nanny, Debbie Pitts, said: "It’s been a very distressing time for all involved, but Molly and Zak have come through it and are determined to give Drew a normal childhood as possible."
Mr Denny added: "It's been very hard.
"You are almost guaranteed to be in a wheelchair by the age of 12 but it affects some boys more than others."
With the support of Action Duchenne and other charities, Drew's parents have been put in touch with other families - and that has been vital to helping their understanding.
The new Living with DMD #DrewsWay group on Facebook was only set up a month ago, and it already has over 200 members while more than £300 has been raised so far ahead of the inaugural fundraiser for Action Duchenne.
Ms Pitts added: "Drew has overcome so much already - he is our little soldier.
"He is so happy, and he's the motivation that is driving us.
"The sponsored walk will be the first fundraising event and we hope it will raise awareness as there is so much more we want to do.
"He is an amazing little boy and we are going to cherish him even more."
For further details about the 'Our first steps!' sponsored walk on July 31, and to donate to the cause that is funding research and a cure for DMD, visit its JustGiving page.