Our story began with the birth of my son Wyatt in 2006. Wyatt was born a collodian baby, this means he had extra skin, he looked like someone had poured boiling water over him, he couldn't keep body heat and ended up in the neonatal intensive care unit, NICU. Nobody in the hospital had ever seen this before, and couldn’t tell me what he had. They had to put a tube through his belly button for fluids and meds, as his skin couldn't take the needles without tearing. He had to be covered constantly in 50/50 paraffin, at two days old they got hold of a skin specialist, who said the skin could go and he may be ok or he could have ichthyosis, which he did. It's a very worrying time for any parent to have a baby that’s poorly, more so when you don't know of the outcome, or what’s wrong.

I managed to take him home after a week in the NICU because I was doing all his creams anyway. I wouldn’t let the staff do it if I could do it myself, after all in my eyes we have children to look after them and it was my job to do it. The skin specialist in the hospital is a blessing. As with ichthyosis, his skin grows too fast, looks like fish scales or snake skin and it sheds up to 10 times a day, so he has to be creamed up to six times daily and bathed in oils. It's very time consuming but so worth it and as a baby it was like giving him baby massages every few hours. Wyatt’s type of ichthyosis is known as lamellar, he cannot not sweat to cool down, this is especially hard in summer as overheating can lead to hyperthermia and he could go into a coma. Also his skin is open so can be prone to infections. And then there’s all the extra cleaning as dust is made up mostly of skin, the creams on clothes, bedding, towels so we go through more vaccums and washing machines.

When Wyatt was one it became clear he had other problems, he couldn’t sit up or walk, he didn’t eat how he should. I fought for him to be seen by a dietician and someone to check his muscles and bones. He really struggled to go to the toilet and could go up to eight weeks without opening his bowels properly. After months and months of banging my head against brick walls with doctors, and even being accused of being an overprotective mum, to which my reply was I would rather be that than one who doesn’t care, his dermatologist supported me and referred us. Wyatt was diagnosed with hypermobility and needed specialist shoes, these made it worse for his legs, as his skin was tight but ligaments loose so they battled each other.

He eventually took his first step aged 34 months. This was a very proud and tearful moment, but every step to get him there was a battle. Why oh why are we mothers never listened to, we know our children much better than the doctors who only see them for five minutes here and there. Wyatt was also very bright at age three he could read a full book without pictures, he was very computer and gadget minded, he also loved role playing games anything that uses imagination, but games were always his way. I was later told he had autism, a diagnosis that I had to fight for again. He had showed some traits; rocking when he spoke and he hated anything going on his hands. As he finally got all his diagnoses, one night he had a seizure in bed. It was a mild one, but I took him to hospital and he was sent home few hours later. They said it wouldn’t happen again.

How wrong they were. Six months later another one, a little worse this time, then another four months later. I begged them to test him for epilepsy, they wouldn’t, said it was too hit and miss, that he would have to be having a seizure or about to for it to see results. Then a few months later he had a massive one, we couldn’t bring him round, a full on seizure, his ears and lips were blue then going virtually black. The ambulance arrived and when they took over I lost it. I couldn’t stop shaking and silently crying; I thought I’d lost him. He was placed in to the ambulance and connected to tubes to administer meds. After just over 15 minutes he started to come out of his seizure. Once stable and on a ward he had needles every hour and heart traces as his heart almost stopped. Luckily the doctor in charge that night was Manchester’s epilepsy specialist and he took him on as a patient.

Within seven weeks Wyatt had a brain scan, it showed spikes over his entire brain, he had been having tonic clonic seizures and epilepsy. He started meds, which changed his personality overnight. Luckily he only had one more seizure, a few months later he had a full brain scan that showed he has extra fluid in his brain canals. It shouldn’t affect him but could. We know the warning signs to look out for. He’s been off the meds and seizure free for just over a year now, fingers crossed he never gets them again.

He still has on going problems we’ve had to fight for anything he needs, he cant walk far and uses a wheelchair. He has no school and hasn’t for a few years. That’s been a huge battle because he has too many problems for mainstream and they say he is too clever for special school. The local special school said they couldn’t take him on because he doesn’t fit with the other children.

Where I go from here I have no idea, but I am still fighting and continue to until he gets what he needs.

I guess what I’m saying is NO MATTER WHAT, NEVER GIVE UP. Always fight for your child to be tested, don’t be afraid to get a second opinion, or change your doctor or specialist if you feel they are dismissing you. It is hard, there are tears, but that smile, or hug and ‘I love you’ makes you a million times stronger than you ever knew you were. It took me three years to find someone who had the same skin condition as him. Through social media I now have people all over the world I can talk to online and some I have met and who have become friends. It’s important to be able to talk to people in similar situations, a relief almost, so please never give up and know you are not alone.

Tammy is a new Family Fund Blogger