We are the Whiting family. We are Andy, Layna, Sean and Grace. 

We always planned to have 2 children a few years apart so that they would grow up nicely together. 

After Sean’s 1st birthday we decided to try for baby 2, several months later we discovered we were pregnant! All through pregnancy everything was fine and nothing showed up in error at the 12 and 20 weeks scans. When I gave birth to Sean it was very traumatic and I was told baby 2 would have to come via c section. We went to hospital on the 7th December 2009 to have our girl delivered. For 7 hours everything was perfect. We had our perfect family. We named her Grace.

At 7 hours old Grace had a coughing episode and they took her to intensive care just as a precaution. I had a sleep as it was late in the evening and the morning I was woke up by some doctors, they had noticed Graces limbs were quite limp and wanted to do tests. 

We agreed as we obviously couldn’t argue with what the doctors were saying and the next day she had a lumber puncture and MRI scan. We got results were didn’t understand and didn’t want to know. 

They told us our girl was very poorly and may not live very long. 

We had to go to Manchester hospital at 7 days old for Grace to have a piece of muscle taken for testing to find a diagnosis.

After spending her 1st 18 days in hospital and is been told she may not live we begged to let us take her home for the Christmas period. We were allowed!

We had a lovely Christmas with our little family and had loads of people visit us and our new bundle. 

We had to take Grace back to hospital every few days, eventually that turned into every week. Our princess was doing so well! The doctors were always shocked at her growth and small bits of development. 

By 6 months old we were only seeing the specialists every month or 2 but had regular appointments with physics, dietician and several other people.

By 1 year old Graces feeding wasn’t very good and she had to have a feeding tube put in her tummy. This made things alot easier for us and also for her as it saved her energy for doing other things like playing. 

Grace also had an operation in 2013 on her tummy as she had really bad reflux and was vomiting then choking. This had been a great thing for her as it kept affecting her chest. 

Grace has suffered from seizures since she was 12 weeks old and is on several medications and also a special diet to try and help these but even the neurologist finds it hard to keep them at bay.  

Grace has never learnt to roll, crawl, talk or walk but she does wriggle and likes to kick her feet. When she out grew her pram she was given a wheelchair and we also have a special bed for her that saves us having to bend to down to do her cares and it goes up and down. 

We live in a bungalow and have an adapted car so she can sit in her wheelchair while we travel. 

Make a wish sent us to Disney world Florida in 2013 and it really was the trip of a lifetime, we were treat like royalty from the minute we set off and absolutely nothing went us thought of or went wrong. 

Over the years we have met a few families with Pdh all of them have been through the Pdh group on Facebook and I can honesty say some of them will be friends for life. We don’t just talk about the children and stay on contact regularly. It’s an amazing group when you need advice, help, or just a generally chit chat or place to release some emotions. We are all going through the same thing and are all here for each other. 

I cannot wait to meet them all again soon.