Jason Gregory

Jason Gregory

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Harriet had been referred to see the Gastrostomy surgeon at the Queen Medical Centre in Nottingham, as her consultants were concerned that the nasal gastric tube that was feeding Harriet feed and medicines may start to cause problems with her breathing.

The appointment came through within a few months and although we were both very anxious about going to see the surgeon, we knew that it was something we had to do in order to find out whether this would help Harriet in the long term.

We arrived at the QMC, just before 10.00 am and made our way to the children`s outpatient area at the hospital, the nurse booked Harriet in and then took her measurements and weight.

After a few minutes we were called into see the Mr. Singh, who was the consultant surgeon for this type of procedure. He asked how Harriet was and whether she had developed any further problems.

We told Mr. Singh that although Harriet was very complex and had ongoing neurological problems, that she was currently stable and happy within herself.

Posted by on in Harriet's Blog

harriets-run-10k

On April 3rd 2011 Shirley Insley on the left and Melissa Insley on the right, completed the Derby 10k race in 1 hour and 5 minutes after training for more than six months for the event .

Melissa and Shirley contacted us a few months before the event and asked if they could raise funds for the Help Harriet Trust, as they had both read alot about Harriet and what we were trying to do for her.

The mother and daughter team managed to raised an amazing £547.50 from family and friends.

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We would like to say a big thank you to Tom Bignall and all the staff at Bartlewood lodge in Ockbrook for raising a massive, £482.93p for the Help Harriet Trust.

You can also support HARRIET by taking part in sponsored events like a Marathon, Walking, Music Event, Parachute Jump, Car Boot, Quiz Night or anything you feel you could do to Help Harriet.

If you would like to discuss how you can raise money for the HELP HARRIET TRUST, please contact Penny Murphy  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  or click on the DONATE button at the top of any of the pages on Harriet`s website

Mum and Dad

Posted by on in Harriet's Blog

After a great fundraising Easter weekend throughout Spondon village last week, which raised over £1000, we were asked by  the Bartlewood lodge in Ockbrook if they could help raise some funds for Harriet`s Trust .

With the Royal wedding being a well awaited celebration of this year, we were asked if Harriet would like to be the princess of Barltewood lodge for three days.

Although Harriet is now able to visit quiet parks and regular hospital visits, she has never been to a public restaurant as we simply do not want to put Harriet in a position where she is unable to cope with too many people in a small environment.

We decided that as the weather was still warm and that Harriet was well in herself that it would be a nice thing for Harriet to see other children and possibly interact in a friendly environment.

The princess dress was purchased and Harriet was driven to Bartlewood, we chose 4pm in the afternoon as we knew this was a quiet period and Harriet would find it easier to cope.

Harriet`s Grandma Penny, mum Lesley and sister Evelyn, were met by the assistant manager of Bartlewood, Tom Bignall and a member of staff.

Harriet in the middle, with assistant manage Tom Bignall and two new friends either side of her pushchair .

Harriet spent a short time in the restaurant where members of staff were very pleased to meet Harriet, after hearing all about her story in the media and Harriet`s website .

Tom took Harriet and the family into the garden area, to show where further fund raising events were being held, which included a cake stall, toy stalls, face painting and array of other activities.

Harriet also spent some time with some children that were enjoying the entertainment, before she had to go home for her feed and medicines.

Harriet`s sister Evelyn was also able to enjoy her time at Bartlewood and managed to get her face painted before we came home

Over the course of the weekend there will be a summer fayre in the garden, followed by a Royal quiz on the Friday. Then on Saturday the fundraising will continue with an all day karaoke and speed dating event. Sunday will continue with further events that will be announced over the course of the weekend.

If you would like to go along to the event, but are not quite sure how to get there please CLICK HERE

We would like to say a big thank you to Tom and all the staff at Bartlewood lodge, for making Harriet and the family welcome and wish you all the best in fundraising over the course of the weekend .

Mum and Dad

After months of fundraising, we were finally in a position to start looking at how best to start tackling disability alterations to the house that would then merge into Harriet`s new room.

The architect had looked for many different ways to get from the main house into Harriet`s new room, but the only way that made any sense was to go straight through the kitchen window and in turn moving the whole kitchen into what had previously been our dining room .

There were no water pipes, gas main or electricity in the dining room to cater for a kitchen and therefore we slowly started to get all the relevant trade people in, to do the work that would allow us to run a kitchen from the new room. 

A door that had been used to go from the dining room into the front lounge had to be boarded up, as the new design meant that the kitchen units would run past the door way.

The electrician was the first to come on site, he advised us that the main fuse box would need to be upgraded and replaced, in order to bring the electrics in the house up to the latest building regulations. This would then allow the electrician to wire in the new kitchen electrics and allow for wiring into Harriet`s new room once it had been built. It was an extremely messy job; most of the ceilings leading back to the fuse box had to be smashed to allow for the new wiring and lighting systems to be installed.

We then had the plumber, he had to remove all the flooring in the upstairs bedroom and landing area, to enable him to merge new water and gas pipes down into the new kitchen area. The pipes were then all positioned in to place and boxed in ready to be connected once the kitchen had been installed.

Once all the electrics, gas and water were in place the ceiling and door were boarded and then room was plastered ready for the kitchen to be installed.

We had wanted to use the old kitchen as it was only a few years old and was in very good condition, but as the new room was larger this meant that it would not fit into the new kitchen area and we therefore had to buy a kitchen that would fit .

The house was now starting to look like a bomb had gone off, there were large holes in the ceiling where the current kitchen was still being used and everywhere just seemed to be covered in dust, no matter how many times we tried to clean it.

We also had the problem of the wall that divided the kitchen from the dining room, this now needed to come down now all the electrics had been upgraded, but would mean new steel would have to be put into place to support the structure of the house.

Funds that we had raised for Harriet`s build were now starting to rapidly go down, as we paid each tradesmen in turn for their work.

We had applied for a Disabled Facilities Grant some time ago and had been in contact with them, we explained that Harriet`s condition was not only deteriorating, but life limiting. We were concerned that moving Harriet upstairs and downstairs was getting to a point whereby it was dangerous. At bath times Harriet had to be lowered into the bath by Lesley and again with Harriet`s Tracheostomy and spinal rods, this was simply something we should not be doing.

A letter from Harriet`s consultant neurologist at the Queens Medical Centre in Nottingham, fully supported the need for Harriet`s Disabled Facilities Grant for the new room on the ground floor of the house. The neurologist stated that is was important for Harriet to be in an environment that would meet her complex medical needs and reduce the risk of Harriet being admitted to hospital for things like infections.

The Disabled Facilities Grant team had to look again at Harriet`s case, given the severity of not only her current condition, but also the length of time we had been on the waiting list to hear about a possible grant .

The Grants team had to come back out to the house and look at the plans we had drawn up by our architect. They looked at the house and agreed that Harriet needed a room downstairs and that they would now look to do their own plans as this would be the only way that we could possibly get any funding towards the build.

We were told that if we did get funding that this would cover the main build of Harriet`s room, but it would not cover any alterations costs from the main part of the house.

As we now press on with the main house alterations, we continue raising funds for the main build which will be Harriet`s new room and hope that we are successful in obtaining a grant towards Harriet`s build.

We would like to say a big Thank you, to all of you that have helped raise funds for Harriet`s Trust through Donations or organising a fund raising event and those that continue to support Harriet.

Our main goals are to now get Harriet`s room built in order to give her a better quality of life and then continue to raise funds for stem cell treatment in the hope that we can stop this disease before its too late .

 

Mum and Dad

If you are or have been in a similar situation with your child please get in touch we would love to hear from you. Contact us, forum, blog.

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