Ollie’s & My Story.

 

Firstly I would like to thank you for taking time out to read this and hopefully gain your support in our climb and to Demelza House Hospice for Children.

As I’m sure you are aware my son Ollie passed away at only 8 years old, on boxing day 2009 after a very brave and courageous battle through December 2009, in fact Ollie was extremely brave and courageous his whole life. Below I have tried to tell Ollie’s and my story through his 8 years and the reason why we are climbing on the 12^th June 2010.

Ollie was born on the 24^th February 2001, Ollie was diagnosed at the age of 7 months with Global Developmental Delay and severe epilepsy. He was taken into in December 2001 for routine test and ended up staying for 3 weeks and missing his first xmas at home. Ollie was from that point put on a cocktail of drugs to help calm his epilepsy which until the day he passed away did not really help control it good enough, he was having approx 10 spasms a day everyday.

Ollie at a young age suffered survey chest infections and would be in and out of hospital all year round on various medicines and treatments. It was decided that Ollie was getting these infections on a regular basis due to resporating on his food and it was decided that Ollie would need to be feed in an alternative manor. Ollie had a mickey button fitted and was feed a liquid food direct to his stomach 4 times a day taking an hour each feed, which was a great shame as one thing Ollie loved was his food.

The new feeding regime helped for a will but then Ollie starting getting infections again and also developed a curve in his spine called Scoliosis, he visited Great Ormond Street Hospital regular and was fitted with a back brace to hopefully try and stop the curve from getting any bigger until he was about 10 when they were going to place a rod along his spine to try and straighten it. Unfortunately this brace did not succeed and the curve got worse and worse. The curve was so serve that Ollie was basically living on one lung as the other was so constricted, this also caused a great strain on his heart. When you looked at Ollie you could see he was always making an effort to breath.

Ollie was due to see the specialist at GOSH in February 2010 to discuss and plan the operation to fuse his spine as he could not wait until he was 10. Unfortuanlty that appointment was to late. Ollie was taking into his local hospital in the morning of the 2^nd December 2009 with a sick bug and temp and became a very sick little boy during the course of the day. By 9pm that day we were advised that if Ollie’s breathing did not improve he would have to be put on a respirator. At 1am he was placed on a respirator and transferred to the Intensive Care Unit at in where he stayed for 5 days. He was taken off the respirator and was looking like he was doing well and was transported back to (local to Ollie) but was on oxygen 24hrs a day. Ollie took a bad turn on the 13^th December 2009 and was again placed on a respirator and rushed to the Intensive Care Unit St Georges Hospital in London where he stayed for another 5 days . Ollie responded well and was taken off the respirator but it was obvious that he was going to struggle, it was decided (due to bed space) to transfer him back to . After a couple of days Ollie became very ill again and from a Parents side of things we had to make the hardest decision of our lives after attending a meeting with 3no Paediatric Consultants and hearing there medical views. Ollie could have gone on a respirator again but would most properly never have come off it or we could make things as comfortable as possible for him, until he decided that enough was enough.

We managed to get Ollie in to Demelza House which is a hospice for sick children on the 23^rd December 2009 as we all agreed that we did not want Ollie to pass away in a hospital, he deserved so much more than that.

We all stayed with Ollie over the last few days we had with him, and managed to receive and give as much love as we could. Ollie passed away at 5.50am on the 26^th December 2009. As much as the pain I felt that morning I’m so glad I was there to hold his hand and he slowly drifted off.

We have decided to walk up Mount Snowdon to collect money for Demelza House in memory of Ollie, as without there support during December and there continuing support, things would have been much harder and more alone. If you carry on reading you will see the information about Demelza House, but I must just tell you that they are a hospice that gets zero funding from the Government and totally realise on money coming in from the public. It costs £1,000.00 a day to look after a child there, and every penny they receive is put to the best possible purpose there is, looking after sick children and trying to give them the best possible life they can have and so deserve.

Please even if it’s a pound donation, support us in this climb just so others like Ollie can enjoy there lives the best they can, and so that they families are given the best support needed.

Thank You so Much.

Tim Down

Proudest Father Alive.