Ollies Fund

Welcome to Ollie's Fund We will take you through the journey of Ollie Kinchingtons life, his family and you will see just how happy this little boy actually is despite his disabilities and how he's got where he is today, we hope you enjoy it .....

With special thanks to everyone that has donated money, love and friendship to help this very special little boy.

We thank you all ...

Tracy & Keith

Many people have asked why I am fundraising to get my son G Therapy......My answer would be because he is my son, and as a mother I want the best for him. If your child falls over and cuts their knee, you wipe his tears, clean their wound and pop on a plaster. Ollie hasn't cut his knee, in fact he probably never will because he can't run to fall over. So this therapy is mummy's way of wiping his tears, cleaning his wounds and popping on a plaster. You never know if the cut will leave a scar, just like I will not know if this therapy will work for Ollie. What I will know is that I have done the best job possible in mending any damage and giving my little man the chance of smaller less noticeable scars!

Go to our website @ olliesfund.co.uk to find out more.

Ollie's Story

After three years of trying to conceive and two attempts at fertility treatment my partner, Keith and I were lucky enough to get our longed-for pregnancy. At the first scan we were overjoyed to find out that we were to have two babies. We were finally going to be parents and not just that, but parents of twins!!

We had to attend a lot of pre-natal check ups and were lucky enough to have lots and lots of scans. Each time we saw our babies we felt luckier.

On Monday 11th October 2004 I woke up to clear signs of labour. We rushed to the hospital where we were told one twin was in distress and the medical staff had to work fast. I was given a general anaesthetic and Keith was asked to wait outside.

I woke up around 6am to the news that I had given birth to two boys. We were told that twin 1 Ollie, was very, very ill and that he was not expected to last the night. Twin 2 Louis was fine although was not feeding, so both were taken down to the SBCU.  

They explained that I had a condition called Vasa Previa. This condition meant that Ollie's umbilical cord was only ever attached via a few blood vessels. The layer which normally forms around the cord to protect it never fully matured. This condition was not picked up in any of the scans performed. If it had Ollie may have been born without complications.

Vasa previa

Vasa previa is a rarely (1:3000) reported condition in which fatal blood vessel(s) from the placenta or umbilical cord crosses the entrance to the birth canal, beneath the baby. The condition has a high fetal mortality rate (50-95%). This can be attributed to rapid fatal blood loss resulting from the vessels tearing when the labour starts.

Vasa previa can result from low-lying placenta or placenta previa, where the placenta is in front of the birth canal. In the case of multiple pregnancies there is an increased change of Vasa Previa, but there are a number of other indications as well.

When vasa previa is detected prior to labour, the baby has a much greater chance of surviving. Survival rates can range from 50 -95%, but are improving as vasa previa is being diagnosed more often.

Vasa previa can be detected during pregnancy with use of transvaginal sonography, preferably in combination with colour Doppler.  When it is diagnosed, elective delivery by cesarean before labour begins can save the baby's life.  Ideally, it should be performed early enough to avoid an emergency, but late enough to avoid problems associated with prematurity.  Immediate blood transfusion of the infant in the event of a rupture may still be necessary.

It wasn't until 4.30pm on that day that I got to see Ollie. All I had for the first 10 hours was a photo to look at. But no amount of photographs could prepare me for how my little boy looked that day. He was thin and grey and had tubes and wires everywhere. Although I was told otherwise, deep down I knew everything would be okay. I'm not sure if it was a Mother's instinct, intuition or just plain hope, I just knew that Ollie was a fighter and here to stay.

It was very hard to stay positive for long though. Each day we would take two steps forward and one step back. We were told that Ollie probably wouldn't make it. It was touch and go for quite a while. I remember being ushered into a room to have a talk about Ollie and his future, or lack of it. I hated that room, and all of those conversations. The consultants didn't hold out much hope of Ollie surviving, they said that even if he did, he would be severely brain damaged.

At 2 weeks old Ollie got ambulanced over to the QA Hospital for an MRI scan. We were told that the report from this would be sent off to London to a specialist who could then explain to us the extent of the damage to Ollie's brain. I still believe they were looking for permission to stop all medical intervention.

We had by now been told on two occasions to say our goodbyes. One time they allowed us extra visitors as they didn't think he would make it. They told us to get as many photographs of the twin boys together as we could. It was heartbreaking. It was like living the worst nightmare imaginable, and then timing that by a hundred...
But Ollie fought on!

On the 21st October, Keith and I were over the moon because we had finally taken Louis home. And yet, it was still bitter sweet. How could we celebrate having Louis at home when Ollie was so ill back in the hospital?
After two weeks of being in intensive care Ollie started to make small improvements. His organs which had all shut down at birth started to function. We celebrated his first pee and were bursting with pride when he had his first feed of milk (via a nasal tube)
By the third week Ollie was making great progress. We were finally starting to get some positive feedback from the Consultants. Also in this third week we got Ollie MRI report back. It confirmed what the consultants had thought. Ollie would have severe quadriplegic Cerebral Palsy which means that all four limbs would be severely affected.  He would never feed orally and his brain would not mature past newborn stage.

Cerebral Palsy

Cerebral palsy (CP) is not a disease or an illness. It is the description of a physical impairment that affects movement. The movement problems vary from barely noticeable to extremely severe. No two people with CP are the same; it is as individual as people themselves.

Cerebral palsy includes a variety of conditions, but the main effect of CP is difficulty in movement. Many people with CP are hardly affected, others have problems walking, feeding, talking or using their hands. Some people are unable to sit up without support and need constant enabling.

The three main types correspond to injuries to different parts of the brain:
 
1. People with spastic CP find that some muscles become very stiff and weak, especially under effort. This can affect their control of movement.
 
2. People with athetoid CP have some loss of control of their posture, and they tend to make unwanted movements.
 
3. People with ataxic CP usually have problems with balance. They may also have shaky hand movements and irregular speech.

Sometimes other parts of the brain are also affected, resulting in sight, hearing, perception and learning difficulties. Between a quarter and a third of children and adolescents, and about a tenth of adults, are also affected by epilepsy.

People with CP often have difficulty controlling their movement and facial expressions. This does not necessarily mean that their mental abilities are in any way impaired. Some are of higher than average intelligence, other people with cp have moderate or severe learning difficulties. Most, like most people without cp, are of average intelligence.

Improvements in maternity services and neonatal care have meant that fewer babies develop cp as a result of lack of oxygen (from difficulties at birth) or jaundice, but they have also meant that more babies with very low birth weights survive. These babies are more likely to have CP.

Understandably this was all hard to hear, we didn't plan to have a disabled child.
I didn't think I could cope with a severely disabled child. What kind of life would he have? How would this affect his Brother? What about all the hopes and dreams we had? Would he know who we were? What about our family, how would they cope with the news? Would he ever get married? Would he go to school and make friends? Would he be happy? But mostly it was why us?????

After all we had gone through to get pregnant, why did this have to happen to us?
After 4 weeks of being in hospital Ollie was finally allowed home. He was being fed through a tube in his nose but he was home.
Ollie decided to pull his nasal tube out him self on day five and was bottle fed from then on. This was when we first realised that we had One Very Determined Little Boy.
We soon realised however that Ollie was actually a very happy little boy. He smiled at 12 weeks which was fantastic and such a magical moment!

We were warned that many children with the extent of damage to the brain that Ollie had, had been known to pass away before they reached their first Birthday. This was one thing that really haunted us daily. If he slept too long in the morning or napped for too long we were sometimes afraid to walk in the room in case he had left us. The boys' first birthday was very hard to celebrate as we were just glad Ollie had made it.

During that first year there were lots of questions but not a lot of answers. We constantly asked if Ollie would be able to do things for him self. Would he walk? Would he talk? Could he feed orally? Would he be able to crawl? Could he see or hear?

As Ollie got to a year old, we realised that he was physically behind his brother by a long way. He couldn't sit or crawl, he couldn't reach out and take things from you and he couldn't get things to his mouth which is a natural instinct in all babies. By mouthing objects they are exploring and learning about them. Ollie wouldn't learn if he couldn't explore. And so we decided to look into further therapies for Ollie in the hope that it would give him the independence and freedom to explore for himself. We looked into the different sources of help and the different types of therapy out there, and realised how costly it would be to help Ollie learn how to enjoy the world he lives in....

We decided in summer 2004 to hold a fund raising event. With the help of my Mum who owned a pub we managed to raise £4000 having a fun day. It was hard work but meant we could go ahead and book Ollie into The Rainbow Centre and Brainwave for therapy.

The Rainbow Centre exists primarily to help children with motor impairment learn to overcome their difficulties using a system of learning called Conductive Education.
The most common cause of motor impairment is cerebral palsy.

Developed over the last 50 years, Conductive Education was only available until 1990 at The Peto Institute in Budapest. The Rainbow Centre was established in 1990 to provide this special system of learning without the need to travel to Hungary. Since this time The Rainbow Centre has helped over 400 children from seven of the Southern Counties. (Hampshire & IOW, Dorset, Sussex, Surrey, Berkshire, Wiltshire, Kent).

The Centre provides for preschool children, sometimes as young as six months, working comprehensively with them in groups during the week until school age. It also provides a Saturday Club for school-aged children as well as individually tailored sessions in some cases.

The Rainbow Centre is affiliated to SCOPE and is part of the School for Parents Network. For more information you can visit the website at http://www.rainbowcentre.org/

The cost of the Rainbow Centre to us is £17 per session, Ollie attends four sessions a week now in there nursery. He enjoys the independence from me and is learning so much each visit. We would love to keep placement there but financially it is a strain.

We was ecstatic when we received the news that ollies rainbow sessions would be covered by The Caudwell Childrens Trust. For us this is a huge relief and one less thing to worry about, we can now focus on other projects.  
From visiting this Centre over the last year we have seen so much progress in Ollie. He can now reach out and grasp things with both his hands. He can take steps when being supported which is a very hard thing for him to do. Most babies are born with the stepping reflex but due to Ollie's brain damage it was never a natural process for him. It has only been since he was 18 months old that this skill emerged. Yet again he has astounded us with his abilities. I never thought I would see my Son walking in any way; this is truly a miracle baby.

Ollie is now growing up to an age when he is ready to discover the world around him. We can see he is interested, and as one of a twin, we see how much both Ollie and Louis would be helped with being able to move around together.

Ollie is ready to learn to walk, which is something we have only been able to dream of. But we were told that we will have to fund Ollie's own walking Frame. This piece of equipment doesn't come cheap at £1200, but it will help him learn to walk over time. We have been very lucky as lots of our Friends, family and people we know through TAMBA (Twins And Multiple Birth Association) have helped us out, and have donated towards the walker. So we now have a brand new walker for Ollie to practice his walking in each day!

But while he is learning to improve his mobility with the walker, which is going to take a long time, he really needs to start moving about and play with his brother who obviously does run around. We also want him to learn about the world around him, and be able to go where his twin does. We longed for Ollie  to have a toddler wheelchair, which would make his world so much bigger. He is definitely ready to venture out!

We were lucky enough to raise enough funds to buy Ollie a Wizzybug power chair. Ollie received his Wizzybug in February and so far is making great progress, although very slow he loves to wheel around wide open spaces and uses it regularly in school.

Wizzybug

The Wizzybug is a fun powered vehicle for disabled children to experience early years mobility. It has a range of controls and seating adjustments and can be used with close adult supervision indoors and out of doors in accessible areas such as level gardens, playgrounds and parks enabling children to have a fun experience with their ‘First Wheels'.

More information can be found at http://www.wizzybug.org.uk

We then went on to raise more funds for a new adapted trike, which we received in May this year. Ollie loves his bike and finds that sharing the same activities as his Twin Louis makes him feel very special. A huge grin spreads across his face each time it is wheeled out.

In the summer of 2008 Ollie begun having seizures. We always knew this could be a possibility so we were very aware of what signs to look out for etc. The first one shocked me to the core and made me very fearful, that yet again Ollie's life would be cut short. It soon become a regular occurrence so Ollie was put on very strong seizure medication. These did not seem to help and he continued to have regular fits. This was so hard for many reason. The seizures made me feel useless as a mother because there was nothing at all I could do to prevent them, surely I was supposed to protect my baby; not just stand there waiting for this horrible experience to come to an end. Also the seizure medication made Ollie very drowsy to the point where he would need to nap sometimes three times a day. He became a shadow of his former self and regressed developmentally by 18 months.

 So all the hard work we had done with his signing and cognitive skills had almost disappeared. Most days I wouldn't even know my own son. It concerned me that this child was no longer my child, my bright spark and giggling, happy Ollie. After the worst summer possible and many over night stays in hospital we made the decision to take him off of the medication as it was obvious it wasn't helping, if anything it was making him worse. So in December 2008 we weaned him slowly off of all the drugs and kept our fingers tightly crossed that the seizures wouldn't return.

Within weeks we were amazed to see our bright spark return. Each day he was more alert, learning new things, wanting to interact with people again and very very happy. So far Ollie has been seizure free and continues to be the happiest he has been in over a year. We hope and pray that he continues to progress and the label 'epilepsy' can be removed from his life for ever.

We now have two life changing projects on the go....This will be the biggest strain on us as a family and also means that the fund raising is an essential part of our lives. These two projects are happening over the next year so 2009 will be filled with, hard work, stressful day to day living, and a trip to India.

The first of our projects is to adapt the run down bungalow we purchased in May 2008. We intend to adapt and extend the property to meet all of Ollie's needs. This task we have set ourselves is a huge one and one that will and has already put a huge strain on us as a family both emotionally and financially. So far we have raised; as a family alone £10, this is almost gone after just the two bedrooms being renovated. Although we are already onto a great start the work has only just begun. We have been lucky enough to get a council grant to help towards the cost of the disabled adaptions. We need a wet room, ramps, doors need to be widened, we need to make the whole of the downstairs large enough and open plan so Ollie has full access in his own home.

We are holding a fund raising spring fete on Saturday 2nd May with a lot of help and organisation our aim is to obtain the remaining amount of money needed for this and to get Ollie some extra therapy.......

This leads me onto the second project. We are planning a trip to India to try G Therapy. This therapy is a homoeopathic form of medication which helps many neurodevelpmental disorders, cerebral palsy being one of them.

We hope that this therapy will decrease his spasticity which in turn will help with his gross and fine motor skills. It should also help with his  cognitive development, it would be amazing if we could get a few more sounds and maybe a few words from him.
If anyone has any advice, help, support or donations they would be happy to pass on to us then please, please get in touch.

You can also visit Ollie's website at olliesfund.co.uk

If you met Ollie you would understand why we are putting so much time and effort into doing what we believe to be the best for him. It isn't only because he is our son, it is also because he has a personality that shines. When something sparkles so brightly it draws your attention. Ollie is our little star and we want him to keep shinning.  

He is a happy, courageous and content little boy. He fought to stay with us at the start of his life, so the least we can do is be here and do all that we can for him now. Ollie and his brother Louis are our life. It wasn't what we imagined our family to be like but now we couldn't imagine a life without our family.

Thank you for taking the time to read our story.

If you think you would like to help then please go to our website:

http://olliesfund.co.uk/ollies_story.html

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