Help Fund Life Changing Therapy For Oakley

To some you are just a baby, but to me you are the world ❤️

This little boy means the absolute world to us. It's fair to say that our journey into parenthood hasn't been the least what we expected. And not just in the usual 'expectations Vs reality' way.

It is a privilege to be Oakley's mum and guide him through his time on earth, but it comes with an awful lot of pain too.

At just 2 days old we were told what no parents should ever have to hear, that our tiny little baby has a rare brain condition and he could be fully dependant on us, for all of his care, for the rest of his life. Potentially blind, deaf, unable to move or speak, tube fed and no higher brain function beyond absolute basic survival. We waited for the doctor to leave the room, then we sat and cried. We made a pact, that together we would do whatever it took and we wouldn't allow his diagnosis of Microcephaly and Lissencephaly to break our family apart.

Shortly after hearing this news, we had to rush Oakley into hospital where he stayed for a week in intensive care, made worse still, because we were unable to stay with him. All we could do was frequent visits to the hospital, 2-3 times a day. Sometimes we'd sit by his bedside for as many as 8 hours at a time.

Back home we tried to come to terms with the diagnosis and the uncertainty it brings.

A couple of months passed and new challenges began. I was out one day with friends when very unexpectedly Oakley had his first seizure, a convulsive episode lasting approximately 15 minutes. An ambulance was called and we were taken to hospital.

Over the next 6 weeks, Oakleys seizures worsened and worsened until the point where he had 14 in a 24 hour period and he went into what is called 'status epilepticus', his seizure wasn't fully resolving before another began. At this point, we were encouraged to make the decision to have him electively intubated. This is the single worst experience in my life. Our tiny, beautiful, fragile boy was taken up to theatre to be sedated and put on a ventilator to give his brain a break from all the seizures. We were ushered out of the room for the team to get to work. 

Laid out in front of us, his eyelids taped shut, breathing apparatus down his throat taped in place, cannulas in a hand and foot, feeding tube in his nose, tape covering most of his lower face with a slit cut for his mouth, catheterised, 3 anti epileptic medications, morphine, muscle relaxant, paralysis medication and fluids pumped into his tiny body. We were told despite all this he was still showing signs of seizure activity. 

Absolutely devastated, I genuinely believed we could be going home without him. Barely able to touch him, my head rested against his, we waited 8 hours for a specialist transport team to take us to Great Ormond Street Hospital. By some miracle he was evaluated at GOSH and considered stable enough to be extubated. However, this episode significantly impacted his ability to feed and so he has been tube fed since the middle of November.

Fast forward to today and I can't count the amount of time we have spent in hospital, in CAU, Majors, the resuss bay, intensive care and the children's ward. Oakley is also diagnosed with complex epilepsy; a form of epilepsy which is difficult to manage, this continues to prove challenging for us, and his medication is constantly under review. After many phone calls, research and pushing, we finally have a good team of doctors and nurses around us and the top Neurologist in the country specialising in Oakley's conditions. Due to the type of conditions and severity, it is expected that Oakley will have a significantly reduced life expectancy and will experience severe developmental delays. All we can do is try our best to give Oakley the very best life possible.

Unfortunately, our specialists only tell us to 'wait and see', there is no pro-active approach we are aware of on the NHS.

However, after some research I have found a relatively new specialist type of therapy for patients with Neurodisabilities available in the UK. But of course, it comes at a cost. The therapy is called DMI (Dynamic Movement Intervention) and the progress babies and children are making is incredible. A 45 minute session is £98. 

We have very recently completed our assessment with the clinic and they are drawing up plans for an intensive therapy programme for Oakley, most likely 2 sessions per day for a week. If financially possible, we would be keen to enroll Oakley in this intensive style programme of DMI every month. That equates to approximately £12,000 per year and this is just the tip of the iceberg. 

Aids and sensory equipment all come at an inflated cost. We're also exploring additional therapy options (more on that in future updates) as you can see, we have a long road ahead of us and just want the best for our boy.

If you feel you could contribute towards our fundraiser by making a donation or sharing with others, we would be so grateful.

Thank you for taking the time to visit our JustGiving page and read our story. You can follow Oakley's progress over in Instagram @acornupdates

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7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover their core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objects, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.