Alfie is our beautiful and happy little 4 year old boy. He's a cheeky little chappy and his smile lights up the room! He loves going to nursery and is a very sociable little boy. There are things Alfie struggles to do such as, keep up with his friends at school, climb, run, ride a bike or a scooter. He doesn't let this bother him and his smile never fades. He just gets on and if he falls down, he quite simply gets back up again with that big smile on his face.

He has a big sister, Mila-Rose who is 6. They both adore each other and as parents we couldn’t be more proud of our 2 children. In February 2018, our family was torn apart with the news that Alfie had been diagnosed with Duchenne Muscular Dystrophy.

Duchenne Muscular Dystrophy (DMD) is a severe type of muscular dystrophy, the symptoms of muscle weakness usually begin around the age of 4 in boys and worsens quickly. Most are unable to walk by the age of 12.

DMD affects around 1 in 5,000 males, is a life limiting condition and at present has no cure.

Here’s Alfie’s story...

When Alfie was a baby he struggled to sit upright by himself. We had concerns over this and went to our GP who referred him to Physio. We were told he had a weakened core and that he would need to be monitored and seen by a physio on a regular basis. As Alfie hit toddler age he continued to struggle sitting up, he didn’t crawl and was delayed with his walking and his speech.

We raised these concerns with our Health Visitor and she referred him to a Paediatrician in January 2017. The referral got lost in the system and in the end it took us a year to get an appointment with a Paediatrician. In this time Alfie had shown great improvement in his mobility and his speech but still struggled with steps and stairs.

We had the appointment with the Paediatrician in late January 2018. It was suggested that Alfie should have a blood test to look for any form of muscle weakness such as Muscular Dystrophy or even possibly Duchenne Muscular Dystrophy. Alfie had the blood test the same afternoon. The next day we got a phone call to say that the blood test was high and that we needed to see the consultant the next day.

We returned to see the consultant who informed us that as the blood results were high that it was Muscular Dystrophy and quite possibly Duchenne Muscular Dystrophy.

We then had to wait a further 3 weeks to have the results confirmed. Our worst fears were confirmed that Alfie had Duchenne Muscular Dystrophy. We were told this devastating news over the phone and were left to deal with the diagnosis alone. No support, no direction and no information as to what Duchenne actually was and how it would affect Alfie in the future. All we were told is that he would be referred to Manchester Children’s Hospital and an appointment would be confirmed soon. We had many questions we wanted to ask but at the same time we were scared of the answers we may not want to hear.

In dealing alone with the diagnosis we have gone through many emotions as a family from tears to anger to plenty more tears. It’s hard enough when your child has a cold or they’re sick. You just want to take it away from them. To be told that your child has an incurable disease is the most devastating news any parent can receive.

This has prompted us to set up this crowdfunding page in Alfie’s name called Action4Alfie. We want to raise awareness of this devastating disease. We wouldn’t want any family to go through the diagnosis the same way as we did so we aim to change this by finding a way to give parents direction and support at the diagnosis stage.

With your help and kindness, our aim is to give Alfie (and his big sister, Mila-Rose) the best childhood we could possibly give them by raising funds for his future to make everyday as normal as possible.

We want to give Alfie the best possible life we can, to give him the chance to always be himself and to be independent. This includes any equipment that he will need to help him be himself and allow him to live a happy and full life. With your help we can give him the best helping hand we can to ensure that his smile continues to light up any room.

Anything you can give to support Alfie and his future is greatly appreciated.

Thank you xxxx