Help Harley fight SMA
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Harley's Story
Welcome to our page, Help Harley fight SMA, we are Emily & Pete and are the proud parents of cheeky Harley!
To give Harley the best opportunities we have decided to set up a GoFundMe page to try and raise funds for specialist physiotherapy, hydrotherapy and the endless specialist equipment he needs.
Harley was born in August 2020, during the Covid Pandemic. We were over the moon at the arrival of our first child.
We met at high school when we were 14 and as the years went by realised we were soul mates. We worked hard and saved all we could to buy a place of our own where we hoped to bring up a family one day.
After 2 years of wedded bliss, we were overjoyed to discover we were pregnant! There were no problems during pregnancy, just the excitement of planning for our new arrival.
In the first few months after Harley was born, he was like any other newborn baby, we loved seeing him grow and develop his cheeky little character. It wasn’t until around 5 months old we started to become increasingly concerned about our beautiful baby boy. Harley wasn’t meeting milestones as expected. He wasn’t attempting to roll over, he couldn’t support his neck and body himself and was unable to weight-bear through his legs or arms. It was painful for us to see him struggle and, as our friends’ children reached these milestones, it became more apparent that all was not well with our dear little boy.
Initially, after seeking help we were told it was just a developmental delay. We decided to push for further medical advice; hoping desperately they would tell us it was nothing to worry about. After an agonising 4 months of waiting to see a paediatrician, our worst fears became a reality. We were finally seen in June 2021. After countless hospital visits, assessments and blood tests, it was shortly after his first birthday that we had the devastating news that Harley had been diagnosed with SPINAL MUSCULAR ATROPHY (SMA).
SMA is a rare genetic neuromuscular condition causing progressive muscle wasting and weakness leading to loss of movement. SMA can affect breathing and swallowing, crawling and walking ability, arm, hand, head and neck movement. SMA is caused by a faulty gene which we now know we both carry, we are also aware that if we have any more children it is highly likely they would also have SMA.
As you can imagine, since this diagnosis our lives have changed beyond recognition.
Shortly after the diagnosis, Harley became seriously ill and was admitted into intensive care with respiratory failure. After a distressing 6 weeks in hospital, watching him fight for his life, Harley was finally able to come home.
Harley now uses a ventilator during all sleep times and has a variety of specialist medical equipment to help keep him well. Due to the specialist training required one of us must be with him at all times. He also has a feeding tube for liquids and medication as he has an unsafe swallow.
SMA affects 1 in 10,000 babies and it was only 5 years ago that the first treatments became available in the UK. Unfortunately, Harley didn’t meet the criteria for the new gene therapy drug but we are so grateful that he met the criteria for a drug called Nusinersen (Spinraza), this treatment is given directly into his spinal cord via a lumbar puncture procedure. Although this is not a cure for his SMA it will hopefully stop any further muscle deterioration and reduce complications of his current muscle weakness. When Harley was in hospital, he received his first dose of this potentially life changing drug – this is a day we will never forget. He will need to have this procedure every 4 months for the remainder of his life.
Harley will need lots of support and interventions as well as specialist equipment and of course there will be unforeseen needs. Like every parent, we want our little boy to be as independent as possible. For Harley this means a few different things.
He is currently in a specialist buggy, but we are hoping soon that he will be able to have his very first wheelchair. Harley may never be able to walk but it is vital that we keep his muscles moving. Alongside his other treatments we do physiotherapy at home to the best of our ability however we do not have the specialist equipment and facilities. Harley really needs extensive specialist physiotherapy and hydrotherapy, unfortunately these are not available on the NHS. These therapies are extremely important to help Harley keep the little strength he has. Sadly, although the benefits for Harley will be huge, these private therapies are very expensive. Treatment costs around £100 each session and we would love to be able to take Harley on a weekly basis, costing over £5000 a year.
Considering all the things he has been through so early on in his life, Harley is the most cheerful, cheeky, chatty little boy, who loves cars, Mr Tumble and his 'stinky' bunny who comforts him through all his hospital appointments! We know there will be many more struggles and hurdles ahead, but Harley always manages to brighten up our days with his contagious smile and giggles and we love him with all our hearts.
We are so proud of our brave little boy and want to do everything we can to help him. Any donations will help Harley in a huge way and make life just a little easier for him.
We appreciate you taking the time to read our story and a huge thank you for any donations – every penny raised will be used to ensure we help provide Harley with the best quality of life possible. We will keep you updated with new posts on a regular basis on here or follow Harleys instagram page @harleys_life_with_sma https://instagram.com/harleys_life_with_sma?utm_medium=copy_link
Please share Harley’s fight with SMA to raise awareness for the condition and join us to help Harley enjoy life as every child deserves.
Emily and Pete Stenning
Welcome to our page, Help Harley fight SMA, we are Emily & Pete and are the proud parents of cheeky Harley!
To give Harley the best opportunities we have decided to set up a GoFundMe page to try and raise funds for specialist physiotherapy, hydrotherapy and the endless specialist equipment he needs.
Harley was born in August 2020, during the Covid Pandemic. We were over the moon at the arrival of our first child.
We met at high school when we were 14 and as the years went by realised we were soul mates. We worked hard and saved all we could to buy a place of our own where we hoped to bring up a family one day.
After 2 years of wedded bliss, we were overjoyed to discover we were pregnant! There were no problems during pregnancy, just the excitement of planning for our new arrival.
In the first few months after Harley was born, he was like any other newborn baby, we loved seeing him grow and develop his cheeky little character. It wasn’t until around 5 months old we started to become increasingly concerned about our beautiful baby boy. Harley wasn’t meeting milestones as expected. He wasn’t attempting to roll over, he couldn’t support his neck and body himself and was unable to weight-bear through his legs or arms. It was painful for us to see him struggle and, as our friends’ children reached these milestones, it became more apparent that all was not well with our dear little boy.
Initially, after seeking help we were told it was just a developmental delay. We decided to push for further medical advice; hoping desperately they would tell us it was nothing to worry about. After an agonising 4 months of waiting to see a paediatrician, our worst fears became a reality. We were finally seen in June 2021. After countless hospital visits, assessments and blood tests, it was shortly after his first birthday that we had the devastating news that Harley had been diagnosed with SPINAL MUSCULAR ATROPHY (SMA).
SMA is a rare genetic neuromuscular condition causing progressive muscle wasting and weakness leading to loss of movement. SMA can affect breathing and swallowing, crawling and walking ability, arm, hand, head and neck movement. SMA is caused by a faulty gene which we now know we both carry, we are also aware that if we have any more children it is highly likely they would also have SMA.
As you can imagine, since this diagnosis our lives have changed beyond recognition.
Shortly after the diagnosis, Harley became seriously ill and was admitted into intensive care with respiratory failure. After a distressing 6 weeks in hospital, watching him fight for his life, Harley was finally able to come home.
Harley now uses a ventilator during all sleep times and has a variety of specialist medical equipment to help keep him well. Due to the specialist training required one of us must be with him at all times. He also has a feeding tube for liquids and medication as he has an unsafe swallow.
SMA affects 1 in 10,000 babies and it was only 5 years ago that the first treatments became available in the UK. Unfortunately, Harley didn’t meet the criteria for the new gene therapy drug but we are so grateful that he met the criteria for a drug called Nusinersen (Spinraza), this treatment is given directly into his spinal cord via a lumbar puncture procedure. Although this is not a cure for his SMA it will hopefully stop any further muscle deterioration and reduce complications of his current muscle weakness. When Harley was in hospital, he received his first dose of this potentially life changing drug – this is a day we will never forget. He will need to have this procedure every 4 months for the remainder of his life.
Harley will need lots of support and interventions as well as specialist equipment and of course there will be unforeseen needs. Like every parent, we want our little boy to be as independent as possible. For Harley this means a few different things.
He is currently in a specialist buggy, but we are hoping soon that he will be able to have his very first wheelchair. Harley may never be able to walk but it is vital that we keep his muscles moving. Alongside his other treatments we do physiotherapy at home to the best of our ability however we do not have the specialist equipment and facilities. Harley really needs extensive specialist physiotherapy and hydrotherapy, unfortunately these are not available on the NHS. These therapies are extremely important to help Harley keep the little strength he has. Sadly, although the benefits for Harley will be huge, these private therapies are very expensive. Treatment costs around £100 each session and we would love to be able to take Harley on a weekly basis, costing over £5000 a year.
Considering all the things he has been through so early on in his life, Harley is the most cheerful, cheeky, chatty little boy, who loves cars, Mr Tumble and his 'stinky' bunny who comforts him through all his hospital appointments! We know there will be many more struggles and hurdles ahead, but Harley always manages to brighten up our days with his contagious smile and giggles and we love him with all our hearts.
We are so proud of our brave little boy and want to do everything we can to help him. Any donations will help Harley in a huge way and make life just a little easier for him.
We appreciate you taking the time to read our story and a huge thank you for any donations – every penny raised will be used to ensure we help provide Harley with the best quality of life possible. We will keep you updated with new posts on a regular basis on here or follow Harleys instagram page @harleys_life_with_sma https://instagram.com/harleys_life_with_sma?utm_medium=copy_link
Please share Harley’s fight with SMA to raise awareness for the condition and join us to help Harley enjoy life as every child deserves.
Emily and Pete Stenning
Organizer
Emily Stenning
Organizer
England