A LITTLE ABOUT US
Hi, my name is Sarah and with my husband Doug, we are parents to 2 wonderful, loving children - Jack (5) and Max (2). On the 10th February 2012 I found Jack, my normal, healthy, bright, funny boy, convulsing on the bathroom floor having what I presumed was a seizure. Never having seen one before, let alone in my own son, I immediately called an ambulance and from that day, our lives have never been the same.
After a few confusing weeks of various diagnoses, we were told that Jack has VIRAL ENCEPHALITIS - an acute inflammation of the brain which has the highest mortality rate of any virus. Jack spent over 4 weeks in ICU fighting for his life before finally being discharged to the pediatric ward for a further month of in-hospital recovery. Tragically Jack did not escape unscathed from this illness, suffering from the more advanced and serious symptoms including episodes of seizures, motor and memory problems.
When discharged from hospital he could barely sit unassisted, let alone crawl, was not eating and not talking. He was practically an infant again needing care around the clock. He tired easily and needed lots of sleep – sometimes only being awake for a few hours a day.
These were dark and terrifying days with no clear diagnosis of what kind of recovery to expect.
We are now just over a year down the line from when he was discharged from hospital and Jack is a completely different boy to the weak, confused and disinterested child we brought home. Intensive and diverse therapy from neuro-physio, horse riding, swimming speech and eating therapy to more alternative therapies like body stress release, cranio-sacral, sound and light therapy have paid off. He is now much more engaged and interactive with the world even though he hasn’t started speaking yet – a source of great frustration for us, though we have to believe that this is a process and will come when he is ready. He started walking in October 2012 though it has taken him a long time for him to build up the strength and confidence to walk any significant distance unassisted.
To any mother who struggles to feed their child I know you can relate to some degree – we have to have Jack fitted with a feeding tube directly into his stomach as he stopped eating and drinking completely. We have had to teach him how to eat again from opening his mouth and biting, to chewing and swallowing. But happily this is going much more easily though we still top him up with specially formulated nutrient rich milkshakes.
Towards the end of 2012 we made the decision to put Jack back in school. His school has been incredibly supportive and has accommodated him as long as he has a facilitator with him to assist him. This initially started off with either me or his nanny accompanying him to school for an hour or two every other day, to where we are now. In March 2013 we found an incredible trained facilitator who has been going to school with Jack every day – he is now spending just over 14 hours a week at school, this from a starting point of only about 4 hours a week. The improvement in stamina to be able to do this is incredible though he does still have little ‘time outs’ to catch his breath when he needs it.
The doctors and therapists talk about the all-important 2-year window period for the most significant improvement to be achieved post a brain injury of this severity.
We are now just in year 2; half way through.
Jack has made incredible progress in the last year. But when compared with a ‘normal’ 5-year old he still has a long way to go.
In the 3rd quarter of last year our medical aid pushed back on what therapy it would cover. We were essentially a charity case once we got out of hospital as we didn’t have any medical savings left and our existing plan wasn’t comprehensive enough to cover the level of therapy Jack needed. We were trapped, as legally you can’t upgrade a scheme in the middle of the year. We fought as hard as we could with therapists submitting multiple motivations as to why Jack needed the therapies. Some were covered, some weren’t. As the months passed the medical aid reduced further what they would cover. With the window period open we weren’t willing to risk not giving jack the best chance at a full recovery.
I did a small fund raiser for Jack in September 2012 by running the Chappies Challenge – a half marathon from Houtbay over Chapman’s Peak drive and then back again.
The funds we raised helped pay for:
- A driver to lift Jack to and from his various therapies and school when I was working (about R1500 a month)
- Neuro physio that the medical aid refused to pay for (between R400 and R470 a session or over R7000 a month)
- Cranio-sacral therapy (R350 a session)
- Horse riding for our usual session when the OT was not available – medical aid won’t pay for this even though the sessions are basically the same (R250 a session)
- Supplements to support his system (R1000 a month)
- Anti-seizure medication not covered by medical aid (R500 a month)
- Other alternative therapies (light, sound, scio) at between R350-R500 a session
- Extra nanny to assist with Jack when I had to go to work – thankfully not needed anymore. (R2500 a month)
At the beginning of the year we were able to upgrade our medical aid scheme (at a higher monthly rate) and thanks to the motivation from our pediatric neurologist they will now pay for neuro-physio, speech therapy, hippo therapy and Occupational therapy.
The big thing for this year is that from March 2013, we saw that Jack was ready for the next step. So instead of having him go to school for the free-play time we rearranged his therapies so that now he can go to school for the 1st part of the morning where the more structured class happens and he is able to do more activities. With that came the need for someone who actually knows what they are doing.
Either our nanny (who has known Jack since he was almost a year old) or I had been going to school with Jack. And frankly it had become a very overwhelming experience to deal with. On a number of consecutive days I had to deal with one boy mocking Jack, laughing at the way he behaved and the noises he made, pointing at him and laughing. Children would ask us why Jack wasn’t talking to them and if he could even see them or understand them. This is heartbreaking stuff for any parent.
And then we met Jo. A chance meeting brought her into our lives and since then we feel like we are on a new path. She goes to school with Jack every day and the difference she has made is immense. The same boy who was laughing at Jack, made him a painting to bring home – completely unsolicited. Children who said they didn’t think Jack knew they were there, will seek him out to play next with him. He used to be anonymous and now he is greeted, asked after and included. This is not to say that it is all smooth sailing. But we are on a road that we didn’t know how to get onto and we are moving forward again.
This is the biggest thing for me. When I get down and start to feel overwhelmed by everything I hold onto that. We are making progress. It may not be visible every day and yes, there are the painful days when we go backwards. But overall each month we are in a new place. A better place. And one we could not have got to without all of the support that we are getting. The old adage that it is not individuals that raise children, it is communities has been proved to me time and again since Jack got sick. It is more humbling that anything I have ever experienced. That so many people have come to meet and love Jack and, in so doing, support us - I have no words for the emotions that evokes.
SO WHAT THIS MEAN?
We want to keep on doing the things for Jack that work for him. Jo is one. The alternative therapies are another.
Last year when we had break away seizures that lasted for weeks at a time (between 1 or 2 seizures a day) we would increase his medication for a while. This would make him drowsy and make it harder for him to do his normal activities let alone be pushed to a new level. This year we tried a new approach. This is where the alternative therapies have been so surprisingly beneficial. Instead of drugs we’ve used a combination of Cranio sacral, light, sound or body stress release and believe it or not the seizures subside.
We have been feeling our way around all of this and have a better idea of what works and how often we need to have these therapies and as Jack has improved we don’t need the same level of intensity – one alternative therapy a week is probably sufficient.
So in hard cold money terms (unfortunate how regardless of how we progress, money is still a huge enabler) this equates to roughly:
- Monthly facilitation – R10 000
- Monthly alternative therapies – R1600.
Should we wish to continue until then end of 2014 this is R232 000.
Facilitation makes up the lion’s share of this amount and from what we’ve experienced is the bit that is non-negotiable. We can’t go backwards on this. I’ve looked at alternative schools which are geared up for kids with special needs and Jo’s rate is more than comparable. She also offers the benefit of coming to Jack’s school which means we don’t have to commute far and he is in an environment he knows and where he is known from before all this happened.
Last year I did a half marathon to raise funds for Jack and the last of these funds have been used to pay for Jack’s March and April facilitation.
As Jack is now in his second year of recovery and we are hoping for great things from him, I decided he should expect more from me too. So on the 6th July I’m going to double my efforts and run the Knysna Forest Marathon – the full 42 kms. I have never run a full marathon before, but this is a time of firsts for my family and I’ll be dedicating every step to Jack.
The "Knysna Forest Marathon” is part of the Knysna Oyster Festival held in the Garden Route where I grew up. It seems like a perfect fit. So when a good friend whose daughter is in Jack’s class asked if I wanted to run I took is a sign. But instead of the half I’m going to go the whole distance.
The race is to be held on the 6th July 2013. I will be running along with some good friends (some doing the half and some doing the full) who are also going to help us raise fund for Jack’s continued support.
I am appealing for anyone willing and able to sponsor our run to give Jack the best opportunity to make a full recovery.
We are trying to raise as close to US$ 26 000 as we can to cover Jack’s facilitation costs till the end of 2014.
We will donate 5% of what we raise to the charitable association SARDA (South African Riding for the Disabled Association http://sarda.co.za/) who offer therapeutic and recreational horse riding for the disabled. 80% of riders are from previously disadvantaged families.
HOW TO DONATE
Email me on email@example.com for Jack’s bank account details for a direct debit (no charges lost through 3rd party admin).
Donate directly using the Indiegogo site
Follow us on my facebook page:
Sarah Priede-Larter: Jogging for Jack
HOW ELSE CAN YOU HELP?
If you cannot afford to donate to the charity run, please spread the word by Liking, Tweeting, Retweeting or Posting info about my campaign.
If you are running the Knysna consider running for Jack as well and finding sponsors to support us through you.
Thank you for all your love, well wishes and support.
With our love
Sarah, Doug, Jack and Max