Hello everyone! We are the Blakeley family, Helen (mum), Steven (dad) and our superhero Harrison, who will be 10 in April. We live in a village just outside of Preston in Lancashire.  Our journey so far continues to have its challenges and uncertainties, but it has also been filled with so much joy, love and laughter.

 

It all started when Harrison was 10 months old, prior to that, pregnancy, birth (emergency c-section and a nice healthy 9lb 8oz) and the early months had been like any new parent, blissful in our own little bubble. Though there were certain things and comments made about harrison’s ‘laziness’, put down to him being a boy was many peoples assumptions of his disinterest in sitting up and tummy time.

 

A suspected ear infection at 10 months prompted me to take Harrison to the doctors as he kept dropping his head, bit like a head bang.  This then turned into a turmoil of appointments and uncertainties as i was told Harrison ‘wasn’t normal’. They were the exact words that came out of a locum doctors mouth. I was in complete shock, emotions were all over the place. What was wrong with my baby?

 

Harrison proceeded for the next 12 months under his pediatrician to have numerous blood tests, EEG and ECG to see if their suspicions of epilepsy where correct, however this was not the case and after all associated tests done based on Harrisons symptoms coming back normal, he was given the diagnosis of Global Developmental Delay and we entered into a genetics programme when he was 3 years old.

 

Harrison started to walk when he was 2.5 years old. He is hypermobile and with various special Pedro boots and apparatus to strengthen his legs he got there, however its come with its challenges! Harrison is a very strong minded, stubborn individual who does things on his terms, walking being one of them so since a baby he has always required mobile assistance to get around, of which he currently has a wheelchair.

 

He is non verbal and has severe learning difficulties, functioning at the age of a 2.5 year old at nearly 10. Harrison attends a local special needs school. Harrison, since 2021, has conquered doing bowel movements on the toilet but still unable to manage bladder control so is in nappies 24/7.

 

Harrison is under various specialists, but most recently since covid Harrison developed tip toe walking.  It has gotten that severe he is due to have an operation on both feet in the next month to lengthen his tendons. I am so scared and nervous about this as I can’t prepare my little boy for what is going to happen.

 

It was December 2023 we went back to the genetics team, thinking we were going into another study when they actually confirmed Harrisons DNA had been run through the system again and they confirmed he had the GRIA2 Gene mutation.

 

We were both in shock and disbelief that they had found something and for it to be so rare as well. Neither myself or Ste are carriers.

 

I was so emotional. It was hard to take in, but more so I think that the hope of a miracle was no longer there which we all wish for right?  That hope of, he will catch up, he will talk, suddenly reality hitting you like a ton of bricks. 

 

Harrison, I would say 90% of the time, is a really happy, content boy. We are very lucky. He doesn’t want for much. Is healthy, no medication and eats well. He can’t feed himself or bathe himself so requires supervision.  

 

We did however notice a big change in his behaviour in summer 2023. His sleeping became erratic (always been a good sleeper) and his moods were up and down but with them came violent biting, nipping and kicking, primarily towards me, his mum.  

 

Behaviour has always been an underlying issue/concern. Harrison has no control of his emotions. One minute he can be laughing, then next sobbing uncontrollably, then back laughing again. A rollercoster for us, never mind for him! 

As he is getting older though and stronger it is a growing worry, particularly with puberty around the corner.

 

Harrison stems through tapping his thumb against his mouth, punching his fist into his other hand and making facial expressions with his mouth when he is really enjoying something. 

 

Harrison loves the water, butterflies, dragonflies, chickens and cows being his favourite things! His ipad is his best friend where he has learnt a lot about the things around him (colours, numbers, animals etc) He communicates through PECS and what we call Harrisonisums where he has developed his own sign language

 

For the last 6-8 years we have watched, learned, listened and developed our own world in which Harrison is understood and loved in the best way we know how. We would be lost without the support and love from our families and friends and they continue to be there for us every step as we go on this adventure together.

 

I am sharing my story today in the hope that there will be other families that can relate or have some similarities to our situation, but in all honesty just looking for others to talk to.