Leo (story told by the mom), UK

Leo is my world, he was born on the 12th of June 2012, he was perfect! I didn't know what I was having and I wanted a boy so badly. And that's what I got: my beautiful Leo! Me and Leo were alone, his father never wanted to know him and I was okay with that. I had a pretty good job and I wasn't too young – I was 24 when he was born and I loved being a mother. Every day was bliss; his smiles, his hugs, learning new things together. Watching him grow and feeling the unconditional love, I would think to myself all my life I never understood when people would say “you don't have kids, you don't understand.” But now I do; he completed me and made me want to be better every day. I was one happy mother!

When Leo was about a year I met Phillip. We went to the same school and met up in a coffee shop one day, we got talking and that was that. I've never got rid of him since! He adored Leo! His family loved Leo and we were all really happy, we decided to have another baby. In March of 2014 I got pregnant; we were expecting a girl! Leo loved the baby; he knew straight away there was a baby in mummy's tummy and would talk to her every day. The 20th of December I gave birth to Ivy, she was 8 days late and had to stay in SCBU as she was born with polycythemia. However, within 5 days we were home. Leo loved her! All he kept saying was yoyo baby yoyo, I honestly think she is the best thing that ever happened to him! He loves and cares so much for her, he would run and get her nappies and wipes; he was only 2 and a half! Life went on, Ivy was a happy smiley baby and Leo loved his sister!

On the 30th of May 2015 Leo was a bit off, he was a little warm but nothing out of the ordinary. It was 1pm and I went to take him for his afternoon nap. He said, mummy I'm hot. I took of his top, put him in bed and he closed his eyes. He drifted off. I looked at him and he let out a noise, and started to shake! I thought for a second that he was joking being silly, but quickly I realized he wasn't responding. His eyes were rolling and I just rang an ambulance and broke down.

I begged for them to come and make it stop. I kept repeating over and over, why won't it stop? Within 4 minutes four ambulance men were standing in my bedroom. They administered Diazepam via the anus and it still wouldn't stop. They took him in the ambulances and I couldn't let go of him, they kept telling me to stop down and all I could think of was his birthday on the 12th of June. I was sobbing praying to God, please no not my little boy not Leo! Please, God, please.

They gave him another 5mg of Diazepam and it seemed to ease it a little but it still wouldn't stop. He got taken to the Jr hospital in Oxford and into the resuscitation room. They suspected meningitis, so they treated him straight away for that. It had all stopped by 1.45 and he was sleeping. An hour later he came round I was so happy I didn't know what happened. He looked through me as if he was so drugged up and cried for his mummy. I tried to reassure him but he was so confused. He vomited a lot for a few hours but at about 6pm he was fine. We stayed in hospital for 4 days, then they said it was a febrile convulsion as I had a family history and he had a bit of a temp. So we went home, tried to carry on. He wasn't right after that, still so tired and moody. My entire family kept saying: stop it, it was a one off, don't keep him in a bubble. So a week after I took him to the park, I just knew he wasn't right but everyone said I was overreacting. He kept starting and acting funny.

Sunday the 10th of June his grandparents wanted to take him swimming, he loves swimming so much. I let them take him and 30 minutes later after he left I got a phone call he had another fit. I was in a state I wasn't with my little boy, I had to be with him. The life guard got him out the pool and luckily a doctor was swimming at the time.

I waited at the hospital and it was the longest wait of my life. The ambulance came and they opened the door. I saw nans face and it was drenched with tears. I knew it was bad! They rushed him to the resus room and gave him 10 mg Diazepam Ketamine. I was screaming, he's my best friend!!!!! I love him, make it stop!! I knew it was bad as they just kept giving him drugs and nothing would make it stop! They looked worried. An hour passed and finally they stopped it but they put him into a medically induced coma. I can't really remember much as I just held his foot for hours whilst he was on a ventilator and cried and cried and cried. Why Leo? Why him!? I love him so much, he's my best friend.

He was in intensive care for a few days then back onto the ward. They said it's not epilepsy but he now couldn't walk too great and was very clumsy. They explained it could be a brain injury from the seizure or it could be from the meds. I couldn't tell you what he had but the list was about 20 different meds long. They sent me home with Midazolam and told me to use it if he had a big one again.

He was good for a few days back to his old self, but 4 days later he started falling over jolting and having little fits. I rang my doctors and they wouldn't take me serious. It was a Tuesday and he had 8 of the episodes, the longest lasting 3 seconds. I didn't know what was going on, he had one and banged his head I had had enough. I took him to A and E. The admitted us sent us for an EEG and soon after they told us he was epileptic. He had both sides slowing on the back of the brain and sharp spikes at the front. I needed an urgent neurologist consult the next day.

He kept having these fits. I would shower him and he would fit, fall down and hit his head. When he would wake up, he would have 4-5. He would get scared and want comfort, it was killing me and my heart was exploding. They said to me it could be Lennox-Gastaut or Myoclonic astatic epilepsy, both hard to treat. However, I wouldn’t know until he had his MRI and lumber puncture. So now I would wait and worry and hope. We have no equipment and no one seems to care he's epileptic, they just want to know what type. I don't know what type it is, but he's still fitting and he's still scared. And he's still my boy.

I wanted to make his life better. It was his 3rd birthday on the 12th of June and I had been researching. I applied for a seizure dog. No one would give a child one and the waiting list was enormous, so I set up a go fund me page to see if I could raise money for one and some safety equipment. So far the total is at £615 and it's only been a week!

I am hopeful, but I want to keep my son safe. I have no bed alarms, no helmet, nothing. And I can't wait around for these things so I'm going to get them and fight for him no matter what.

- June 20th, 2015

Contact info:

Twitter: @Ifyouseeacow

Fundraiser: http://www.gofundme.com/wu7qd5d5w