This is the story so far in Ollie & Amelia’s mum’s own words.
This is the story of how Battens Disease has changed the lives of Ollie and Amelia and their family forever, as read on Key 103 by Lucy, Ollie and Amelia’s mum .
First we would like to say a massive thank you to Key103, Cash for Kids and everyone at When You Wish Upon a Star for giving us the opportunity to share our story. A story that is unfortunately real, and is being lived by a normal family.
January 13th 2011, our third boy was born. We named him Ollie or Olliebobs as we like to call him. Although the birth was complicated, Ollie was checked over and was said to be healthy.
Ollie was a really happy baby, who would welcome everyone with a cheeky grin.
At the age of six months Ollie was diagnosed with asthma, and spent most of his first year in and out of hospital. However, this didn’t stop Ollie from hitting all of his milestones and he was even walking before the age of one.
It wasn’t until Ollies second birthday that we noticed a speech delay and he became increasingly clumsy. Each time we mentioned this to health care professionals, we were told not to worry and that he would catch up. We put our trust in what they said and carried on with life.
Breathing in that amazing new born smell, feeling that warm breath on your skin, counting them tiny little fingers and toes. We had just been handed our beautiful baby girl, after a complicated pregnancy, and nearly losing her during labour. Amelia was the final piece to our family. To look at her she was perfect in every way.
Already having three young boys, we knew life would be busy but we couldn’t wait to start our life as a family of six.
Like any other family we had our ups and our downs. We had our fair share of hospital visits with all four children suffering from chest problems.
But life was good. In fact, looking back now it was perfect. We had four very happy and healthy children.
Ollie had been attending speech and language therapy but no one was concerned and again we had been reassured that he would catch up by the time he reaches school age.
On the 9th September 2014 Ollie had his first seizure. Ollie had been to pre-school that day, on returning home Ollie developed a temperature. A trip to our local GP confirmed a urine track infection. Later that evening whilst bathing, Ollie had his first seizure. On pulling him out of the water we realised that he was no longer breathing. Ollie’s dad performed mouth to mouth resuscitation on his own son and brought our little boy back. Ollie was rushed via ambulance to our local hospital where we were told Ollie had, had a febrile convulsion. A seizure which is brought on by a high temperature. Ollie was able to come home the next day, we felt relieved, thankful and we believed that the nightmare was over, little did we know that this was just the beginning.
From then on Ollie began having weekly seizures but with no signs of a raised temperature. Doctors at our local hospital couldn’t work out what was happening to our little boy so we decided to take him to Manchester Children’s hospital in the hope of finding out what was wrong and of course most importantly making Ollie better.
In October an E.E.G was carried out confirming generalised epilepsy, Ollie was prescribed anti convulsive medication. Doctors decided to do a MRI scan which showed a small abnormality in the cerebellum, we were again reassured by professionals that this was nothing to worry about. Ollie was referred to a neurologist. By this point parents’ instinct had kicked in and we knew something was seriously wrong with our little boy. Ollie had yet more tests and we were left waiting for answers.
Though out all of this Ollie was his normal, happy and lovable self; he continued to attend pre-school and was thriving. Ollie could run, he was talking in sentences and had found a love in football.
A few weeks later we received a phone call asking ourselves to bring Ollie in to meet with the neurologist. Our gut instincts told us something was wrong but our brains said the doctors would not be asking us to bring Ollie with us if it was bad news.
The date the 13th February 2015, a day that will stay with us forever. I can remember the colour of the walls, even the smell. As we sat in that small room with Ollie on his daddy’s knee we were told that our child has Battens Disease, that there is no cure and that life expectancy is between six and twelve years. Ollie was just four years old! Our world fell apart in that moment. We were told Battens Disease was so rare that they had never come across a child with it before.
Children with Battens Disease cannot make an enzyme that is responsible for eliminating waste that builds up in the brain. Over time affected children suffer worsening seizures and progressive loss of sight and motor skills. Eventually children with Battens Disease become blind, tube fed, bedridden, and unable to communicate.
Currently there is not treatment for Battens Disease. Battens Disease is always fatal.
Trying to process what we had been told we decided to get away as a family for a few days. A short break away turned into a nightmare as Ollie had fourteen seizures in the space of a few hours. It was at that point we decided to stand up for Ollie and get him the best care possible.
We began to research and found specialists in London as well as the amazing support system at the BDFA. Exactly four weeks later we travelled to London to meet the specialist. After a long discussion we decided to get Amelia tested for Battens Disease after learning she had a 25% chance of also having the Disease.
A few weeks later we received a call from the genetics clinic asking us to come in to test our older boys, who were unaware of anything that was going on. On arrival we were ask to leave the boys in the waiting room with Mikes Dad.
For the second time our world fell apart as we learnt our beautiful princess also had Batten Disease. Amelia had only just turned two, she had been hitting all her milestones, to look at her you would never know. Walking out to our boys in the waiting room, trying to hold it together and act normal has to be one of the hardest things we have ever had to do. The boys were not tested that day; there was no sane reason for them being there.
Ollie and Amelia and every other child with Battens Disease deserves a chance of living life to the full. We continued our research and found help overseas. Everyone we spoke to had never heard of Battens disease so we decided to set up a facebook and twitter page called Ollies Army Battling Against Battens to raise awareness in the hope that one day there will be a cure.
As parents we have found it a constant struggle with doctors and other health professionals to get Ollie and Amelia the best care. We will arrive at hospitals in an emergency situations and doctors don’t know what to do as the disease is so rare they have never seen another child with this condition. We end up having to tell the doctors how treat our own child, as we are the ones who have done the research, we are the ones living the nightmare.
Whilst trying to come to terms with what will become of Ollie and Amelia our thoughts also turned to our older two children, who could also have the disease. After three attempts due to the hospital losing the boy bloods not once but twice we received the news that the boys have the all clear. We have to wait however until they are sixteen to find out if they are also carriers of the disease.
Ollie has just celebrated his firth birthday surrounded by his family and friends. He can no longer walk or play football, he struggles to speak and our boy who once loved food can no longer feed himself and is losing weight fast. Ollie suffers with seizures and picks up every bug going. He spends lots of time attending appointments and is often getting poked and prodded. However, our Olliebobs is still that smiling beautiful boy, he is famous for his high fives and thumbs up. Amelia has recently been assessed and we are very proud to say she is hitting all her milestones!
We are currently fighting for compassionate use of a drug that is showing positive signs of slowing down CNL2 Batten Disease. It might come too late for Ollie which doesn’t bear thinking about. How can we give one child a chance and not the other?! This drug is administered directly into the brain every two weeks for the rest of the child’s life.
Our time now is dedicated to spending as much quality time with all four of our children whilst raising as much awareness of Battens Disease as possible.
The charity When You Wish Up A Star has helped us to do just that. In December we spent the most magical weekend in Centre Parcs. We didn’t have the worry of being too far from a hospital as When You Wish Upon A Star have their own medical team, allowing parents to relax knowing help if needed is never far away, and yes Ollie being our Ollie decided to put the team to the test and have a seizure as we arrived. Everyone was amazing Ollie was looked after, our other children were entertained and we felt supported and not alone.
When You Wish Upon A Star have welcomed us with such love and support. A daytrip out might not sound much, but to a family who has a child who is poorly, a family who struggles to keep up with the day to day things as well as appointments, phone calls, the constant battle to make sure they are doing everything possible for their child. A daytrip is a lifeline. Its time where we can forget for a few hours and spend time as a family of six having fun. Not only do Wish Upon A Star Create brilliant trips but they also film the whole day. We cannot explain how special it is to receive pictures and a DVD a few weeks later, these are memories that we can treasure forever.
The team at When You Wish Upon A Star are always happy, full of smiles. They make our children laugh and they help us to enjoy life.
Our older boys are going through so much; they do not understand what is happening. They see their baby brother deteriorating in front of their eyes and soon they will have to watch their baby sister going through the same thing. At the age of nine and seven they have watched their brother be brought back to life by their own father, they have witnessed countless seizures, they worry that we won’t be at home when they return home from school as so many times Ollie has had to go into hospital without warning. For them to be able to enjoy the fun times with their brother and sister and make amazing magical memories rather than remembering the bad days means more than words can say.
The most important thing now is to make every moment count.
We don’t bother with our old worries and we will continue to fight for our children and raise awareness of Battens Disease.
Every day that we spend as a family of six is a gift and we will never take this for granted.