On 23 September I will be jumping out of a plane from 10,000ft to raise money for Chestnut Tree House, the hospice for children in Sussex. I would urge anyone who can sponsor me to do so, and help support this wonderful charity.

 

Chestnut Tree House is very close to my heart, as their amazing staff have supported me and my family though the darkest hours we have experienced. Those that know me or my wife Kirsty will be familiar with our story, for those that don’t, please read on.

 

When our son, Alexander, was born at home on 28 March 2012, he seemed like a beautiful healthy boy, but very soon became lethargic, and struggled to feed properly after only a few hours. Having been convinced by professionals that this was quite normal in a new born baby, Kirsty and I persevered for 2 days before we started getting very concerned with his lethargy and his difficulty feeding and took him to hospital. An hour later he was on a ventilator, a day later we had been transferred to the Trevor Mann neonatal intensive care unit in Brighton.

 

After 5 days of tests, we had a diagnosis; he had a very rare metabolic disease called Non-Ketotic Hyperglycinemia (NKH). We were given the terrible news that our beautiful boy would not survive off the ventilator, and we could do nothing for him other than make him confortable for the short duration of his life. After a trip up to London for a liver biopsy, we returned to Trevor Mann baby unit on Easter Sunday, where we were supported by the excellent doctors and nurses for a week. Nothing was too much trouble; we even got to walk Alexander on Hove beach in a specially adapted pram with a portable ventilator! These were incredibly difficult times, but we were determined to make as many memories as possible.

 

It was here that we were introduced to Louise from Chestnut Tree House. Like many people from the Sussex area I had heard of the organisation, but it was not until I needed them that I realised how amazing they really were. We had lots of support from Chestnut Tree House whilst in hospital, they even brought in a tile kit to make lasting hand and footprints, and we were offered the chance to take him to Chestnut Tree House to remove his ventilator, or to have Nurses with us 24 hours a day at home, should we have wished to do so.

 

On the Friday, I attended my father’s funeral, he had passed away in an accident 9 days before Alexander was born, whilst Kirsty stayed at Trevor Mann. When I arrived back, he opened his eyes for the first time in over a week, it was one of the most incredible moments of our lives, we honestly thought we would never see his beautiful blue eyes again.

 

After a day of goodbyes with family members on Saturday at the hospital, we took him home on Sunday, to extubate him. He was born at home, and we wanted him to return home. We wanted him to sleep with us, without the ventilator; we wanted to bath him; we wanted time alone to make memories of our precious family. We were fortunate enough to have had those first few days at home already, but the traumatic events of the time in hospital had eroded some of those memories.

 

We took his ventilator out and tried to make the most of however long we had left, which we were told could be minutes, hours or days. After he survived the first night, we took him to the beach and to Chestnut Tree House to use their sensory room and hydrotherapy pool, and to just be around their beautiful surroundings, knowing that if he were to pass away there they would understand the situation and support us.

 

He survived longer than we expected, much longer, as he is still with us today over 4 months on. Alexander proved the doctors prognosis inaccurate and is a rare surviving child with NKH. He fights hard every day, suffering with seizures; neurological damage and other NKH side effects, the road ahead is bleak, but without support from charities like Chestnut Tree House I wonder how we would have got through this difficult time, and how we will get through the difficult times ahead.

 

There are hundreds of people like us that depend on this support. In a perfect world we would have no need for a place like this, but the reality is that any parent could find themselves needing the support of Chestnut Tree House, and it is vital that we group together and continue to support them, to ensure they can continue to look after those families that need it.

 

In summary, the facility is amazing, the staff are amazing, what they do is amazing, so please help by raising an amazingly large pile of cash for this incredibly worthy cause.

 

Thank you,

 

Jon

 

p.s. I don’t like heights….