Olivia's Story- Our Precious Princess- by Laura Rees

From the moment we first layed our eyes on our beautifull little angel in January 2009 we knew and felt what the feeling of 'unconditional love' was like. All the feelings you feel as new parents overwhelmed us completely. She was here, she was perfect and she was ours to love and hold and cherish and take care of forever.We were blissfully happy with life as new parents to this stunning little princess. So blissfully happy that we decided to try for another little bundle of joy and found out were having another on christmas eve 2009 when little  Olivia was just 11 months old.We then went on to have our beautifull Baby Boo Bailey in August 2010.Olivia was a late walker, and she was falling over a lot but we were told this was down to the fact she is trying to walk and all children develop at different rates so just wait for it to happen.She began walking very unsteadilly at 18 months about a week before they would have looked into the fact she was struggling a bit, so we were over the moon that she had finally began walking. A little around a month after bailey was born, we began noticing olivia making some strange little movements with her head and her hands, olivia was now 20 months old. We told many doctors and alerted health visitors of this and were told she was having balance issues probably due to flat feet, so we were put on a long waiting list to see a specialist. Over the next few months we began noticing olivia was very off balance and we began thinking a lot more was going on than we originally thought.We finally saw a specialist who told us she definately didnt have flat feet but she was a little flexible which is no problem ata ll and very common. We mentioned the balance and little movement issues and we were told its more than likely down to the fact shes a late walker and she is still finding her feet properly. We left and felt a little better but deep down we knew it was more than this, just what was it??? was the question on the tip of our tounges for the next few weeks. We moved house in 2011 and in turn we moved doctors also. In this time olivias movements of her arms and head were becoming more frequent and were worrying us a lot more. It was very difficult to explain to people what was happening to our little girl as these little episodes of head nodding and arms flicking would last about a second or 2 and were very easily missed by many people who spent time with her.Only really me and her dad were the ones who saw this happen as they were very frequent at first signs of waking and the first half of the day.Olivia would experience anything between 30 and 100 of these jerks depending on if she was having a good day, or not.By 2pm Oliva was not experiencing any of these episodes and was a completely normal functioning little toddler. We were so confused at what was going on at this point. I finally met a doctor who was interested in what i had to say about Olivia and right away she said the words'petit mal' and so we bagan our journey with Epilepsy. From this point on we were put on waiting lists to see doctors and spent most of our time waiting to get any type of answers as to what was happening with our little girl. In this time olivia was starting nursery in the afternoons and was spending the first half of her day at home with us falling over, bumping herself on furniture and generally feeling tired and then going off to nursery. By this point i was an absolute complete and utter nervous wreck, worryong constantly that she would have an accident in nursery as at home i never left her side and kept my eyes on her constantly. We finally saw a doctor in 2012 and had an EEG confirm that it was infact seizures that olivia was having. We were given the abscence epilepsy diagnosis and sent home with an anti-epilepsy medication. After many days/hours/weeks of research i began to think that in fact they had got it wrong as Olivias seizure types were not typical of Absence epilepsy and more typical of myoclonic. With this original thought i proceeded to phone our doc and explain what i was thinking and to my suprise right there and then on the phone she competely agreed with me that the seizure type was myoclonic and that changed the whole diagnosis we had been given.We went on to ask many questions, none of which were answered and we began feeling like Olivia was not with the right doctor and we needed to see someone else. Here begins the real journey of Olivia's GLUT1 DS. We waited many more months for our appointment to come around with a specialist peadiatric neurologist and during this time we decided to stay med free against the wishes of the first doctor.  In our eyes we had no diagnosis, so how can you medicate a child with such strong drugs when you have no idea as to whats happening??? This baffled us completely.The next doctor we saw answered every single question we had(and i had lots) and put olivia on the waiting list for ALL of the tests i had read about prior to the appointment. We left that day with no real answers but the hope that were finally getting somewhere with this doctor. Over the next few months Olivia began getting worse and she was having new seizure types.(maybe this is down to the fact we tried another drug) that failed once again. Olivia was at the point she was unable to make the small 10 minute journey to her nursery without callapsing.It was such a difficult time for us, to watch your child so helpless is the worst feeling in the world. We then took many ambulance rides to hospital where by the time we reached A&E and waited hours for a doctor who knew anything about epilepsy, olivias episodes had worn off and there were no signs of the anything wrong at all. Such frustrating times.An eeg was scheduled and we were told to provoke Olivias seizures in any way we can to make sure the EEG picks the seizures up. We kept her up very late and got her up very early, we also kept her without food as hunger was a big trigger we thought. Thankfully the EEG picked up absolutely loads of activity. Even tho it was hard to watch our daughter hooked up to this machine and twitching all over the place because we, her parents had provoked it, were so happy that for once the doctors could see what we were seeing on a daily basis. Olivia went on to have many other tests, one of which was a 'lumber puncture'.Within a few weeks were told the GLUT1DS diagnosis and were put in touvh with, a 'DAISY GARLAND' dietition.(normally the wait for this is 8 -12 months) we were very lucky. Our dietition was with us within about a week and we began 'THE KETOGENIC DIET' almost immediately in may 2013.Within 2 weeks Olivia was completely seizure free. As time went on Olivias personality began to change and her energy levels were sky high. We were able to do things we had never done before and we found ourselves going on long family days out and just appreciating life to fullest for the first time ever.We finally had our little girl with us, the little girl we had allways wanted Olivia to be, the little girl who for a long time we thought we would never see. Life was amazing and still to this day dec 2013 Olivia remains seizure free, and all the trials and tribulations she faced as a toddler seem a thing of the past. 'THE DAISY GARLAND' FUND OLIVIAS DIETITION AS THEY ARE NOT FUNDED ON THE 'NHS'. PLEASE HELP ME TO SUPPORT THIS AMAZING CHARITY WHO HAVE SAVED OLIVIAS LIFE. WITHOUT THEM, I DONT KNOW WHAT WE WOULD DO. They have given the biggest gift anyone could give, 'the gift of living life to the fullest' we are eternally greatfull to this amazing charity and will allways support the use of the 'KETOGENIC DIET' as the treatment of choice for epilepsy patients.LETS MAKE A DIFFERENCE and help this charity change lives and change the minds of doctors who believe medication is the only way. PLEASE SUPPRT OLIVIA BY SUPPORTING 'THE DAISY GARLAND' thankyou, Laura, Olivias mum x

 

Daisy's Story

Our Amazing Daughter, Daisy - by Sara Garland

The Beginning

"Yippee! It's a blue line! We're going to have a baby!"
My mum passed away suddenly a month prior to us finding out that I was pregnant. As if that wasn't enough, David and I were up to our eyes in renovating a Victorian house we had recently bought and then, blast, pre-eclempsia reared its head during the last five weeks of an otherwise uneventful pregnancy.

The Birth

Daisy was induced three weeks early and she sailed into our lives and hearts in the early hours of the morning, Saturday 11 April 1998. A vintage year! When the midwife handed Daisy to me we were amazed at the little wise eyes that met ours. Daisy was an old soul from the very start.

Coming Home

One morning, when Daisy was in bed with us, David noticed that one of Daisy's arms was trembling. At the end of the episode we noticed that she wasn't able to use her arm for about half an hour, after which time things seemed fine again. This happened again a week later, so I mentioned it to our health visitor who said to go and see our GP if it happened again.

First Seizure

On 1 October 1998 I was feeding Daisy her lunch when she seemed to just 'slip away' and lose consciousness. Her breathing was very faint and I was unable to rouse her. We dashed to hospital and after various tests were kept in for overnight observation. Just after 4am Daisy went into status epilepticus. The shaking started in her left arm, spread to her left leg, then moved across to the other side of her body, limb by limb. This lasted for 45 minutes.

Intensive Care

We spent a long time in intensive care, while endless tests were carried out, eventually transferring up to the children's ward after a couple of weeks of further tests. Daisy continued to seize and was finally discharged on anticonvulsant medication.

Life Is A Roller-coaster

Along with every new medication came a new type of seizure and a whole host of side effects. Life for us was like living on a roller-coaster. We never knew what the day would bring or how it would end. David and I struggled to cope in our capacity as new parents with a 'special needs' child. We would go to bed at night wondering how we had managed to get through another day and wake the next morning wondering how we would survive the next.

Longest Seizure

Daisy's longest status seizure lasted six and a half hours (the longest six and a half hours of our lives). It was at that point that I realised that Daisy was never going to get better, and that she was going to die unless I could find a way to stop the seizures.

Alternative Therapies

I marched down the alternative route path, leaving no stone unturned, but nothing seemed to help. We knew we had to do something - but what?

The Ketogenic Diet

In November 1999, I met with Daisy's neurologist and explained our fears about continuing Daisy on medication and she agreed that we could start the ketogenic diet in January 2000. Daisy went on the Classic version of the Diet and went into ketosis after 3 small ketogenic meals. After 2 days her seizures reduced, both in frequency and duration. We were amazed. By the time we left hospital, it was as if we were bringing home another child. Already we could see a more relaxed and contented Daisy.

Six Months Of Being Seizure Free

The milder Daisy's seizures became the more motivated we became and on 29th July 2000 we threw Daisy's medication away - along with all the stoppers, syringes and tiny plastic measuring pots! We found a wonderful nanny for Daisy and I returned to work on a part-time basis. For the next six months Daisy was seizure free. Daisy's speech was really developing from babbles to actual words. At one point she had 45 words, was able to identify all her colours, numbers up to 10 and many letters of the alphabet. She loved running around and everything seemed to be hunky-dory. Little did we realise what was lurking around the corner...

Roller-coaster Days Return

Due to a medical blunder in February 2002, Daisy received hospital treatment for a condition she did not have. As a result, her seizures returned with a vengeance. Daisy's recovery was gradual in the months that followed but sadly, she never regained her vocal skills and never completely regained total seizure control.

Hillcross School, SW London

Daisy attended a wonderful school - she was one of four special needs children in Reception Class at Hillcross Primary School, Morden. Daisy adored school and was welcomed with open arms by the caring staff.  Daisy's nanny Julie now works in the Special Needs Unit at the school.

SUDEP

Daisy remained on the diet, without a single break, until 13 April 2004. At 7pm that evening I tucked her into bed, checking on her as usual throughout the evening. David went in to check on Daisy in the early hours of the morning and to his absolute horror discovered that she had passed away, gently, in her sleep from SUDEP (sudden unexpected death in epilepsy patients).

Parents Hold Their Children's Hands A While And Their Hearts Forever

What can I leave you with? I will leave you with the image of a wonderful little girl who fought an uphill battle every single day of her life. A litle girl wise beyond her years who bore her illness with the most incredible bravery and grace. A little girl who touched the hearts of all those who met her. Daisy's absence has left a huge gap in our lives. A gap that will never heal or mend, and the pain of losing her will never, ever, ever go away. Daisy was, and still is, a life changer and I hope that through her charity, she can help to change the lives of many little children with epilepsy