Thanks for taking the time to visit my JustGiving page ,

In 2007 i gave birth to my beautiful baby girl Taylah who came 6 weeks early and was born on the 4 August, as far as i knew i was going to have a happy and healthy baby girl as the scans didnt pick up on any of her problems so when the day came for her to come into this world i was so excited as i had 2 boys already so this would have completed my family.

From the miniute Taylah was born we noticed the first problem on her right hand and it looked like she had broken her thumb but we then noticed she had a extra thumb which was fully formed with a bone and nail but it was only cosmetic so i wasnt concerned, Then we noticed her ears they didnt look normal and it looked like she had extra ears growing either side as well, over the next 2 days i began to notice Taylah was struggling to feed so they done a few checks and then informed me that she had cleft palate but it was servere and she had no roof in her mouth at all so they inserted an ng tube so she could be fed through the tube straight in to her tummy again they said this could be repaired and would not cause any long term problems so no concern.

As the days went on the doctors were finding more and more problems all accross her body, we were told that she had a hole in her heart but they usually close on their own, then they began to check things in more detail and done more tests to find that she had a curved spine and some of the the vertabre in her spine were the wrong shape and fused together,and it was then they noticed her oxygen levels were low , it was then she was transferred to another hospital whilst there in scbu they monitered her continuously and started doing genetic tests as they believed it was a genetic disorder and if they knew what it was they would know more about what was going on.

Taylah was beginning to get stronger and was not diteriating so she could go back to our local hospital untill she was ready to come home, Once back at the local hospital i was taught how to tube feed Taylah and how to insert the tube if she was to pull it out (which she done quite alot at home),Taylah also had monitor on her which detected each breath she took and if it didnt detect a breath for more than 15 seconds it would alarm to let us know .

The day came for me to take my daughter home and we had to do what they call a car seat test to make sure the baby is comfortable and fits securly in the seat which is when we found out that after about 15 mins Taylah would struggle to breath as the oxygen couldnt get round the body properly so we were told that was the maximum she would be able to travel in a car which then gave us the next problem if we ever had to get her to the hospital we could struggle as it was about 20 - 25 mins away but that was a bridge we cross when we came to it. We got home and was settleing in and things were ok, we were all adjusting because i had been spending every day at the hospital and hadnt seen my boys much so it was hard evrything fitting into place but like i say we were doing well and attending regular hospial visits so they could monitor Taylahs hole in her heart and the flow of oxygen around her body and over a period of a couple of months her oxygen levels were dropping even more so they refered her to great ormond street hospital where they carried out a ct scan and thats when we were told the horriffic news.

Taylah had another hole in her heart and all the arteries and vessells around Taylahs heart were all blocked and narrowed and in very delicate conditions so the oxygen couldnt get round her little body and eventually she would run out of oxygen, we were told this on the 11 Jan 2008 and they told us that she had a couple of weeks to live as there was nothing they could do.They couldnt get to her heart because of her spinal problems as it would have broken her ribs an spine if they tried and even if they could get there her arteries were in such bad condition that they would just break if they tried to do anything with them and another major factor was that they couldnt put her to sleep to operate as every time they tried to insert a tube down her throat it would close up and she would stop breathing so there really was nothing they could do. We were deverstated but we were determined to enjoy every miniute we had left so we quickly arranged her christening which was the 2nd febuary 2008 and we were just trying to keep things as normal as possible for the boys sake we did explain that Taylah was really poorly and that she would be going to heaven soon but i dont think it sank in so we just carried on. Time went on and we were still attending the hospital appointments to monitor her heart and by the april they told us that she was stable and wasnt deteriating and they were amazed at how well she was doing and that she had proved them wrong , she was getting bigger and growing well and they told us that the 2nd hole in her heart was keeping her alive as it was letting the oxygenated blood through and releasing the pressure on her heart where it couldnt get through the blockages so they basically said to us well its down to Taylah now she has already proved us wrong and as they still hadnt found anyone else born with this condition so they didnt know the process of it or what the outcome would be now

I now belived that Taylah would be fine and grow up to be ok i had registered her at our local nursery to ensure she got a place and we went on with life, My youngest son was invited to a birthday party so we went along and Taylah came too and it all went well , then a few days later my son came out in chicken pox so we did what ya get told calpol and calamine lotion and he was ok then Taylah came out with them.

Taylah became very poorly very quickly she came out with her spots on about the 5th may and we took her to the hspital and they said they would keep her in untill she had recovered from the chicken pox as she was struggling to cope with it.By the 11th may Taylah was in an oxygen box as she was struggling to breath but we still thought she would be ok as she was a fighter and had fought this hard she would get through it. On the 13th may 2008 we were getting ready to go to the hospial when thay rang and told us that things were very bad and we needed to get there asap. When we arrived we were called into a room and they told us that the chicken pox had gone to her heart and lungs and it was all too much for her little body to cope with it and that she had hours left to live ,

I called my family to bring the boys from school to say goodbye and we were all round her cot for most of the day just spending time with her im not too sure if she knew we were there as she hadnt woken up for 2 days as she wasnt strong enough too but the time passed quickly and it was getting late so my parents took the boys home after saying goodbye, as the evening passed Taylah got worse and thay had to resusatate her twice but i was still convinced she would be ok as it still didnt all seem real.By 1am on the 14th may 2008 they were having to breathe for her with a bag as she was unable to do it herself, and they said that the time had come to stop and it was time to let her go , it was such a weird feeling it was like i was watching someone else going through it and i was amazingly calm i guess part of me knew it was the right thing to do as there was nothing more that could be done and at least she wouldnt be suffering anymore so they explained what would happen and asked if we wanted to hold her till the end so i said yes they took off all her machines and wires and gave her some morphine so she wouldnt suffer and they placed my little baby girl in my arms and i cuddled her and told her how much i loved her untill she had gone.

Taylah died at 1.37am on the 14th may 2008 she was 9 months old.

Still to this day we do not have a name for Taylahs genetic disorder and they have not been able to find anyone else in europe born with it.

A special little girl x

We gave her a wonderful funeral and there was so many people there as she had impacted so many lives and now she has a beautiful headstone .

The reason i choose this charity is because when we were told that Taylah was terminal we were referred to this childrens hospice in milton and they have played a big part in our lives up to this day. We used to go to the hospice with Taylah and use the services there which including the sensory room and the hydrotherapy pool which Taylah absolutly loved , she also had some music therapy sessions which she enjoyed, They also offered us rest bite if we wanted it or we were all welcome to stay there with Taylah(the whole family), they were so supportive  and even after Taylah had passed away they were there to help us all, i had a year of breavement councilling at the hospice and and the boys attended regular siblings days which were great for them as they were with other children who had sick brothers or sisters or their brother or sister had passed away so they had people to talk to who understood how they feel and what they were going through, i think that helped them with the grieving process and we all attend the memory days each year where everyone gets together to remember their children and and release a balloon and each day is themed they put so much work into it.

EACH hospices do an amazing job and they have never asked for a penny for anything they have done so as huge thank you to them for all their help and support i am doin this skydive and i would like to collect as much money as possible so they can help other families like mine so please if you can sponsor me i would be very grateful, your money is going to a great cause as there is no harder loss than the loss of a child and these people help get you through one of the hardest times of your life so please help

THANK YOU