Help Harry live his best life

Our beautiful boy Harry, was born on 14th July 2021, at the healthy weight of 9 pounds. Whilst watching Harry on his first night in hospital I made a comment to the medical staff about his breathing, as it appeared noticeable and erratic. Harry was checked over by a nurse and doctor and we were told that his breathing was "normal". We left hospital and headed home to start our new life as a family of 3.

During those first few weeks we were still a bit concerned about his breathing and so we asked the midwife and Health Visitor on separate occasions if we should be worried. We were once again told his breathing was normal by both of them.

It was during our 8 week check with the doctor that we asked again about Harry’s breathing. We also asked if it was normal that he couldn’t yet hold his head up.

Our doctor examined Harry and said he wanted to send us to the hospital immediately, so that they could do some tests on Harry.We arrived at the hospital where they measured Harry’s oxygen saturation levels. These showed that his oxygen levels were low while sleeping. They were also concerned with his low movement. We were asked to stay in hospital overnight so that they could monitor Harry.

Harry was put on oxygen overnight and it was discussed that Harry would need to have some blood tests. As it was the weekend we had to remain in the hospital until Monday to have the blood tests taken and sent to the Evelina Children’s Hospital in London. We stayed in hospital for 10 days.

Once home we then had a call from the Evelina Hospital to go straight up to them the next day. They had the results from the blood tests and needed to let us know the results. It was then we were told that Harry had a genetic condition called Spinal Muscular Atrophy Type 1(SMA Type 1). We were given a lot of information about the condition at this appointment, including which treatment they were hoping to give Harry. The treatment they wanted to give him was a new gene therapy called Zolgensma which had very recently been approved for use. Harry then had to have blood tests to see if his antibodies were low enough to have the treatment and to check his liver enzymes.

We had to wait a few days for the results. When the results came back Harry’s antibodies were fine but unfortunately Harry's liver enzymes were too high for him to receive the gene therapy treatment at that time.

The treatment plan then changed to accommodate this news. Harry instead was to have a loading dose of Nusinersen (also known as Spinraza)which is an injection into his spinal cord. Harry has these injections every 4 months.

Harry also had other measures could be into place to support Harry, such as providing him with a ventilator to help him breath overnight and at nap times. During our stay in hospital Harry also had a cough assist machine to help him clear his chest of anything that might be lingering there, Harry has to do this twice everyday along side all the other physio exercises to help strengthen his body in the hope one day he'll be able to stand and walk.

Over the last few years Harry has developed and very bad curve to his spine called scoliosis which Harry has to wear a spinal brace 23 hours a day to try and help maintain his spine as he will have to have spinal surgery when he a bit older, to help Harry try and maintain his spine as much as possible we have found a private company that has done a lot of research into spinal braces for children with SMA, but this does come at a cost. We are hoping to use any funds that are raised to help with this and any other equipment or treatments that may help Harry. Thank you for taking the time to read Harry's story ❤️

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, they will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objectives. If, in those circumstances, we are unable to use all or part of the funds for the benefit of our child, any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.