Interview with Wayne Yendle HERE. Visit the IeuantheLion Memorial Fund page HERE.

Ieuan Jonathan Thomas-Yendle, born on 4th March 1994 and flew away on 3rd July 2007.Youngest son to Rose and Wayne and a new brother for Louis and Ben who were given the honour of naming him. Louis chose Ieuan after Ieuan Evans the Welsh Rugby Player and Ben chose Jonathan after Jonathan Davies another Welsh Rugby Player. These names were then put into a hat and drawn out as Ieuan Jonathan.

Ieuan made a very quick entrance into this world, it was that quick his dad Wayne did not make it to the actual birth.

He was beautiful, like a little mouse, another Son, and a new baby Brother for Louis and Ben, Grandson to Maureen and Billy, Gwenny and the late Ken. Nephew to Helen and cousin to Rebecca he had another eight weeks to wait for his new baby cousin Scarlet to arrive. He was our third Musketeer.

As the weeks went by Ieuan began to thrive and grow more beautiful, beginning to notice, smile and make baby noises.

Going into the second week of July 1994, Ieuans feeds became a bit of an ordeal, refusing to take them after only a small amount, but he seemed alright in himself, a week passed and it was still a bit of a battle, and then a tooth appeared, Ieuans mum was so pleased, she rang her mum to say panic over Ieuans cut a tooth and assumed this was why he was off his feed. But things still did not seem right.

On the Thursday of that week it was baby clinic and Ieuan went along to be checked and weighed and the health visitor did not seem to be concerned about anything we then went down to Ieuans nana Mo, Mos with Helen and Scarlet. Helen and Nana Mo were still not really happy with Ieuan and his feeding pattern. That afternoon we contacted the GP with our concerns as Ieuan seemed to be blue around his mouth, we were told to take him to the hospital to get him checked by the paediatricians. When we arrived Ieuan was seen to as priority and was admitted to the childrens ward, where he was put on one and half litres of oxygen as the blueness around his mouth was because his body was lacking in oxygen. Things seemed to move quite quickly, being connected to a heart machine, oxygen monitor amongst many other checks and blood tests. Ieuans consultant did think that Ieuan may have to be moved to the Heath Hospital in Cardiff as he was so ill and at one point did not think he would make it through the night, but with the help of the medication and care Ieuan pulled through, and we were in hospital with him for about three weeks.

He was due to be Christened whilst he was he hospital with a big celebration party, but unfortunately this had to be cancelled, and there was concern that he may even have to be Christened in hospital. We overcome this and he was Christened in St. Michaels, Newport on 7th August 1994.

At this point we were still in the dark as to what the problem had been at one point the doctors thought he had Eosinophils Leukaemia as his Eosinophils level was raised quite high.

Ieuan was referred to the Eileen Thompson Oncology Clinic Llandough Hospital in Penarth to see if they could find out what the problem was. After undergoing lots of blood tests, lumber punctures scans and various checks in March 1995, we had a telephone call from Oncology Clinic at Llandoungh to ask us to go down to see the Consultant (Dr. David Webb) to go through the results and the findings.

Ieuan was diagnosed with Hypergammaglobulin Anaemia (CD 40 Lygand Deficiency) which is a rare immune deficiency of the blood.

This meant that Ieuan would have to receive monthly intravenous infusions of Sandoglobulin which is a replacement of the immune system as his body did not produce this as it should and also take antibiotics every other day as a cover. Neutropenia was also a problem that Ieuan had, which is part of the immune system, if the Neurtrophils level is down in your body you are open to a lot more germs. Children are more open to infection, and the areas of concern in Ieuans case were mouth ulcers like craters, ear and throat infections. Ieuan had to have a daily injection of G-CSF to combat the Neutropenia as you can imagine this was not very nice for Ieuan being only just one year old to have everyday. Mum and dad was shown how to administer this on a daily basis, otherwise it would have meant either a nurse calling to the house everyday or going to the hospital daily, this would have been even more traumatic, but we battled on and even though Ieuan did not like it, we explained why and it became part of his life. He was very very brave. He also had weekly blood counts which we would do at home and then take them up to the hospital to get checked out. This procedure went on for a number of years on a weekly basis, but Ieuan still kept smiling.

Ieuan was admitted to hospital when a bad infection occurred and he would have intravenous antibiotics and with his monthly infusion and regular blood counts believe it or not lived his life to the full, he did not like having to go to the hospital to have needles put into him, but we explained that this had to be done to keep well. Llandough Hospital Oncology Clinic became part of our life, and the doctors, nursing staff and play specialists made the visits so much easier for Ieuan and his mum. They were our friends too.

Ieuan had very little time off school, only for hospital appointments and of course if he was not well.

An example of what could happen if his neurtrophils were low, we were on holiday in Tenby, we had been there for two weeks, on the last day Ieuan accidentally slipped in the shower and banged his mouth. Ieuan became quite poorly and on our way home from Tenby the next day we rang the hospital to explain what had happened and he had now developed a temperature, they told us to call in and get his blood count checked, this we did and the blood count showed that he was Neutropenic. Ieuan was then admitted to hospital with an infection in his mouth as he had bit his lip when he fell in the shower, Ieuan was there for two weeks on intravenous antibiotics.

Dr. David Webb Ieuans consultant left to go to work at Great Ormond Street in London, and his new consultant was Meriel Jenny. Ieuan had a lot of confidence in her. As time went by Dr. Jenny wanted us to go up to Great Ormond Street to see Dr. Graham Davies a Haematologist to have regular checks on his liver, as all the medication he received may have some impact on the organs within the body.

We went up for this visit and we were hit with another problem that could happen with this immune deficiency (CD40 Ligand Deficiency). If Ieuan caught the germ Cryptosporidium from drinking water, where a person who did not have this immune problem would have severe sickness and diarrhoea, in Ieuans case the germ if not detected could live in the liver and slowly destroy this organ. This meant we would have to go to Kings College Hospital on a yearly basis for Liver and Spleen scanning. This was a bit of a blow, but as long as Ieuan was ok we would go anywhere. Dr. Davies then prescribed more antibiotics to take on a daily basis to cover this germ and Ieuan was not allowed to drink any water bottled or tapped, we had to have a special filter tap fitted which hopefully kept this bug away. Ieuan was a very sensible your boy and understood no drinking water only from his special filter from home or sterile from the hospital, the school was given a regular supply of this.

The only cure for this immune deficiency was a bone marrow transplant.

After reading this account of Ieuans illness as you can imagine it was a lot for a young child to cope with but he did. It was part of his life and as long as he had his treatment and medication and it kept him well he got on with it. Smiling singing and dancing and doing all the things he loved.

In March 2004 Ieuan was now 10 years old, it was very mild but we noticed Ieuan seemed to be slightly unsteady, holding things, a bit clumsy, and Ieuan in the past had been very independent. Ieuan had beautiful handwriting, this also was changing. We mentioned this to his Consultant and she referred him to Dr. Johan Water De Naude, Neurological Consultant at the Heath and after some tests he was diagnosed with Sydenhams chorea, which is a movement disorder that can develop after a certain infection and hopefully go like it comes, and could get worse before it gets better. Ieuan learnt to cope and live around this horrible thing in the hope one day it would go like it came and at one stage seemed to plateau.

As time went by Ieuans walking became very weak and his speech began to disappear, but we still lived in hope. In September 2005 Ieuan started the High School at St. Josephs but after only about two weeks had to have a wheelchair and assistance from teachers and sixth form students to enable him to go to school.

Ieuan underwent many Brain Scans, lumbar punctures, blood tests, Dr. Johan Ieuans Neurologist informed us that whatever this problem was it had now gone beyond Sydenhams chorea. Ieuan had visits from two professors and his problem was shared with European Countries, but no positive answers were coming through.

In 2006 Ieuans health was deteriorating and was virtually solely dependent on his parents.

In November 2006 for four weeks he was given a treatment Rituximab to see if this would help with what was going on within the brain area of his body and was also given a higher dose of the Sandoglobulin as this can sometimes help with any swelling within the brain, he developed a twitching within his body which did lead to a massive fit, this was so frightening especially for Ieuan, this then had to be controlled by more medication. In December 2006 Ieuan finished this Rituximab treatment we then had to wait and see if this would have any effect.

After all this intense treatment Ieuan went back to school for 4hours a day in the middle of January 2007, he was exhausted when he used to come home and would sleep for about 6 hours and then wake up for something to eat, this went on until February 14th 2007 Valentines Day, he did not go to school again after this date as he was too weak, he managed to get to his 13th Birthday on 4th March 2007 where all his close family and friends came to the house for his birthday party and we had a clown, he still managed to smile and looking back on it now it was just unbelievable how this young boy kept going, having everything taken away from you bit by bit with no explanation.

On 9th March 2007 Ieuan was very unwell he was sleeping a lot he did not have the energy to do anything for himself, he had a turn where he was focused with no movement, we had to take him to hospital where he was admitted.

Ieuan was now being fed through a tube as his swallow was now very poor, but we knew he was now getting all the nourishment his body needed and we were so grateful for this for him.

After two weeks Ieuan had started to put on weight, and even though he could only communicate with expression and his thumb he did not look so gaunt, and we still had hope.

Dr. Johan Ieuans Neurologist suggested a Brain Biopsy as all the other tests, scans gave no lead to the problem, this was decided and the procedure was carried out.

We lived in hope for our boy, but nothing came back only slight inflammation of the brain.

On Thursday before the Easter Weekend we brought Ieuan home from hospital to nurse him, this weekend was the worst weekend of our lives especially our beautiful boy who could not tell us where it hurt or how he felt, he just lay there crying, little did we know this was a transitional period where Ieuan was losing his sight. Another week passed and we nursed Ieuan at home with lots of medication and help from the community nurses.

We were then approached by Ieuans consultant to see if we would like to take Ieuan to Ty Hafan Children's Hospice you can read about this story within the website.

On 30th April, 2007 Dr. Jenny Ieuans Consultant told us our worse fears, that there was nothing they could do to help Ieuan and his body was beginning to shut down, it could be weeks or months.

We then went back to Ty Hafan and were there for 2months and 2days and on 3rd July 2007 at 4.40pm Ieuan flew away to a better place.

On 4th July Ieuans body was taken to University Hospital in Wales for a post mortem.

There were fears that this horrible thing that attacked Ieuan could have been CJD (Creutzfeldt-Jakob disease ) Because of this suspicion he was Police Escorted to the pathologist.

In February 2008 we received the results of the post mortem it was not CJD. Encephalitis was found, but the pathologist could not find why this had occurred, he named Ieuan as a very unique case. So even his illness was unique just as he was through his life.

Samples have been kept by the pathologist with our permission to send over to America to see if they can research into unknown brain diseases and perhaps one day we may have an answer and this research may help somebody and save them the suffering and torched that Ieuan our very brave Lion King had to bare.