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Stevie’s story

“Life was perfect. Stevie was three-years-old and I was five weeks away from having baby number two.

Stevie was that perfect baby who slept through the night at six weeks old and could take her anywhere with out any problems, met all those milestones just like an other child, she only had a slight speech delay.

One day I noticed Stevie would look up at me and just drop to the ground but get up and carry on as normal. I asked my doctor about it at my anti natal check up, and she said we will get this baby out then see how she is then. Once getting home from that appointment she did this another four-five times and I knew that this was not normal and rang my doctor, she said to bring her in first thing in the morning and we will get her seen to.

We went first thing in the morning and the doctor sent us to Palmerston North to see a paediatrician, we stayed the night had a few tests and tried to video her having these drop attacks. I felt like an over protective, pregnant hormonal mother.

We soon came to think that she had a type of epilepsy, but the paediatrician wanted to find the cause of this. I had so many thoughts about a future with epilepsy and the struggles ahead of Stevie.

Stevie was then booked in to see the neurologist and also had scans, lumber puncture and bloods booked too.

Baby girl number two, Tori arrived and we had our own family, the smile on Stevie’s face was magic.

I had said to my husband that I knew what ever was wrong with Stevie was not good, I had that motherly gut instinct.

Tori was one week old when we were in hospital having these tests done for Stevie with the neurologist. He ordered some blood tests to be done for a few genetic disorders and to be sent to Adelaide. They would not tell us the name of these conditions as they were not nice and it may come back negative. We were also told this could take four weeks but it was the longest eight weeks ever, I think not knowing is in some ways is worse.

Our paediatrician rang and said the results were back and it didn’t look good. I rang my husband and we took the trip to Palmerston to meet with him.

I’ll never forget that moment he sat down, looked at us, and told us Stevie had Batten disease, a very rare genetic disorder that meant she would never get to grow up and it is always fatal. My first question was can Tori (now nine weeks old) also have this, and he responded yes, every child we have there is a 25% chance they will be affected. I cant describe how that moment felt, tears flowed out without touching my cheeks and straight on to my lap.

But I remember thinking that poor doctor just had to tell these parents the worst news possible and those parents were us, we were just numb. Our bright young beautiful healthy looking child is going to die and there is no treatment or cure for this, the only thing we can do is mange the symptoms and seizures as we go.

Next thing was to explain this to our family, how to you tell them that she is going to die? Everyone kept saying she will be fine, but now we knew exactly what the future was and we had be the strong ones for Stevie.

So many emotions and challenges lay ahead of us and little did we know, we only had one year with her after diagnosis.

We attended a Batten’s conference in Australia a few months after that, which was the best thing we could of done as it gave us so much knowledge, as well as contacts.

With this horrible disease Stevie’s health declined fairly quickly, she struggled with her behaviour, she would show her affection by biting and scratching her little sister. Her seizures become worse and worse and hard to medicate, she would stop breathing and go blue, vomit and more medication was given but the side effects were not great either, she was extremely restless, lucky to get one – two hours sleep a night, and was known to do all-nighters. Stevie would often would scream for six hours at a time.

Not to forget we also had a little bubba in the house too, Tori, who was thankfully so good. I often felt guilty as Stevie was pretty much 24/7 care.

Before we could blink she was struggling to walk and eat and her speech was decreasing more and more. A few weeks before Christmas she stopped walking and just crawled as much as she could. She was always covered in bruises from falling and losing control of her body. In the new year we were admitted to hospital, and had a nasal gastric tube put in as Stevie was unable to eat much and struggled to swallow, this was all new to us we had to learn how to check it and feed her.

Stevie’s 4th birthday was approaching on the 8th of February, and all we had wished for was to have a big party and that she could walk. Not sure if it was coincidence but she started a new medication and that afternoon she took a few steps. I was beyond excited. I even had a hope that maybe the tests were wrong and she is that miracle child. After not being able to walk for seven weeks she was able to walk and all in time for her big party.

Soon after this, Stevie was back to just crawling and the reality of this cruel disease was taking more and more from her.

We were constantly having appointments with specialists, and also Stevie’s nasal tube was coming out either from her pulling/rubbing it out or sneezing or vomiting it out, this meant a 45min drive to Palmerston hospital to have it re inserted. Some days this could happen twice, and on top of this we were getting maybe an hour of sleep a night. I look back and wonder how I ever did it.

Our social worker was fighting for us so hard to get to starship and get the mic-key button inserted as this would make life so much easier.

I don’t believe anyone, not even family and close friends were aware of how hard it was – sleep deprivation, a child that wont stop crying and not being able to console them, watching your child struggle with simple things that were once easy and suffer from seizures, on top of having a baby and a husband who still has to get up every day and go to work.

Finally we had a date to go to Auckland for her surgery. We worked out that in the eight months she had the nasal tube in we had approximately 80 new ones put in, this was not an easy procedure either as we had to pin her down, medicate her and get it in with out coming out her mouth and in the correct spot in her tummy. This often took three to four adults.

Surgery day was here and it was one of those necessary evils, it was going to make life easier but it was also the disease taking control. We spent five days in starship learning how to use the mic-key button and meeting with other specialists while we were there.

Friday night we flew home and Stevie screamed the whole flight which was really hard with people staring and making comments, which hurts, but you learn to ignore those people.

We drove home from Palmerston airport to meet my mum who was looking after Tori. We were catching up and talking about how nice it was to have no tube on her pretty little face again.

I was changing her nappy and stood her up to stretch her out and unfortunately the new tube got stuck in her nappy and came out – we had literally been home for an hour. I rang Palmerston hospital kids ward, who by now knew us very well and they told us to come straight over and they would put it back in, as it was so new it had to be re-inserted asap. We got it back in and came home again. When we arrived home I decided to hook Stevie up for a feed and as soon as I did this she screamed, and this was not normal for her, so I decided to leave it till morning and let her try get some sleep.

Morning came and it was feed time along with all her medications and again she screamed in pain. I knew it wasn’t normal so I rang the kids ward and they told me to give some pain relief and see how she goes.

I rang back an hour later and they told us to come over so we packed up and went over again. The next 36 hours were sad and unexpected. On Sunday evening Stevie’s body gave up and she passed away. This was a real shock to us and part two of Stevie’s story began with finding out from post mortem that the tube was not inserted into the correct position and all the fluids we were giving her were going into the stomach wall and ultimately septicemia took Stevie’s life.

In hindsight you need to look at the positives and that was she was no longer suffering. She was still able to say some words she still had her vision.

I whispered to her one night that if she ever wanted to go she could that mum and dad will be ok. I believe this all happened for a reason as hard as it was.

As I look back on our journey it was a short one but jammed packed full of every emotion you could think of, and ones you wouldn’t think exist. Stevie was the most beautiful little girl with eyes that sparkled and long thick wavy hair that made everyone envious. She was simply too beautiful. We met and gained friendships that are for life, and we lost friends. The struggles were real. You cant be the same person you were, your children aren’t meant to go before you and that will forever change you. You learn things about yourself and others. Stevie touched so many peoples lives for the better and we couldn’t be prouder.

I’d do anything to have her back and free from Batten’s. It is truly one of the most horrible childhood diseases and New Zealand is so advanced with research into finding a cure and helpful treatments and honestly with the help from Cure Kids and others I believe there will one day be a cure!”

-Erin, Stevie’s mum

Late Infantile Batten disease is a rare, inherited neurodegenerative childhood disorder, which robs seemingly healthy young children of the ability to walk, talk and feed. Currently, there is no cure, and no effective treatment. We are funding research that aims to optimise gene therapy strategies to treat Batten disease.

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