“When Archie was born, he was very unwell – his heart was double the size it should’ve been and he spent a lot of time in hospital. After countless tests and scans, he was diagnosed with Pompe disease when he was just four months old.  

Archie’s condition causes a build-up of a complex sugar called glycogen in the body’s cells, affecting muscles and other tissues. It’s caused by a deficiency in the enzyme acid alpha-glucosidase, which is needed to break down glycogen. This leads to a progressive weakening of muscles and can affect various organs, including the heart, liver, and respiratory system.

As soon as we received Archie’s diagnosis, he started receiving enzyme replacement therapy via intravenous infusions. The infusion takes five hours and Archie has these every two weeks.  

Children with Pompe disease often don’t live to see their first birthday and the healthcare specialists didn’t think Archie would make his seventh birthday, so we feel blessed for every day we have with him – he turns 14 in August.

As a family we enjoy going away when we can, we love our movie nights at home every Friday, and days out together. We have had lots of adaptions made to the house to make it suitable for Archie, and we try not to let his disability dictate his way of life. Archie enjoys swimming and trampolining.

It was the Community Nursing Team from East Surrey who referred us to Momentum earlier this year, and we can’t thank them enough for everything they have done for us.

Kerrie, our Family Support Worker from Momentum came to see us at home and talked through the various ways they could help us. Kerrie has been brilliant at checking in on us regularly to see if we are ok, and if there is anything she can do.

Our whole family are struggling a lot emotionally – two years ago we were told Archie had two years to live, so it feels very much like we are living on borrowed time now and that is the daily reality we face. Momentum have organised weekly counselling for my husband which has really helped him to process things.

We have a six-year-old daughter called Lulu and my husband and I often feel guilty that we are not giving her the time and attention she deserves.

I cannot work due to needing to be around for Archie, so there is no spare money – we are relying on my husband’s income for everything. We can’t afford to go on holiday so when Kerrie suggested a break at one of Momentum’s respite cabins, we were so grateful.

We went to Church Farm Holiday Village in West Sussex at the end of May and it was just what we needed. Sadly, we couldn’t take Archie due to all the physical adaptions that are required for him when we go away, but I was able to spend quality time with my daughter, without any distractions, which I will be forever grateful for. Lulu did four or five activities at the holiday park every day – she was exhausted! She particularly enjoyed swimming in the outdoor pools, and it was lovely to see her so happy.

For anyone thinking about booking a break at one of Momentum’s cabins, I would say to go for it and grab it with both hands! Try not to feel guilty if you are unable to take your child who is unwell – it is important to give time to your other children too. Church Farm Park has beautiful views of the lake, and it is very peaceful. Momentum provides you with a discount code for all the activities and the shop so it can be affordable when you are there. You can also take your own food and cook in the cabin.  A respite break can give you head space, the chance to decompress, make memories and reenergise yourself.”

Our respite breaks are designed for families supported by Momentum, offering a chance to take a break from the pressures of challenging treatments and enjoy some time together in a peaceful, safe environment close to home. Caring for a seriously ill child can make holidays difficult, so our cabins in the New Forest and West Sussex provide a perfect alternative for families seeking a much-needed getaway.

We are grateful for the generous support from many trusts and foundations, including: the Hospital Saturday Fund, the Barbara Ward Children’s Foundation, Webb Family CT and the Hollick Family Foundation.

Are you a Momentum-supported family? If you would like to stay at one of our respite cabins you can find out more here

Story taken July 2025