'We were battling to make ends meet with our special needs son - so we came up with a plan'

By admin
13 November 2015

This Joburg family were heartbroken when they discovered their beautiful baby boy had Cerebral Palsy, and struggled to make ends meet with the costs of caring for him. But then they came up with a way to make it work – now they want to help families just like them all over SA.

"Jaden Ashton Pothier was born a healthy normal baby on the 17 July 2013. We were delighted parents from day one, and are so proud of our little ball of sunshine.  Jaden has changed our lives forever.

He has always had a way of lighting up the room.  He simply smiles at everybody and anybody with the most loving of faces.  He literally captures people’s attention wherever he goes.The most common thing people would say is, “He’s such a happy child” and he really is -- except when teething of course. On a regular visit to the paediatrician, she unexpectedly expressed concern about his development. She called us later that day wanting us to have tests done on Jaden immediately.  Before we knew it, we were at the hospital for EEGs and MRIs and all sorts of things no parent wants to see their baby go through. When he was just 9 months old, our Jaden was diagnosed with Cerebral Palsy (CP).  This was a huge shock and placed enormous strain on our hearts, relationship and finances.  My wife Megan could not return to work and the costs to provide for Jaden’s tests and special needs started to soar.

'The bills to support a special needs child started piling up'

The bills to support a special needs child started piling up, even with medical aid.  Government grants only support people earning less than R2 850 per month per home!

So what happens to families that are used to two incomes in a house and now have a special needs child? For example, if both parents earn R7 000 each and pay rent of R5 000 - R7 000 and their child is diagnosed with special needs they will be left with R7 000 to support the entire family.

The family would not be able to move to a much cheaper place without entering environments they are not adapted to. You can only save so much on food. Bottom line, the family is R7 000 short. Instead of living on R14 000 they have to live on R7 000 AND manage special needs expenses that rocket through the ceiling.

After some time Megan and I were discussing the trials that a family goes through in these situations. It is hard on the heart, mind and body. It is heartbreaking to find out that your child is diagnosed with a special needs. The family start to face financial difficulties and children get big -- fast.

This means heavy to carry around and work with every day. Most special needs children, like Jaden, cannot be left to play by himself unless in some form of support frame and ideally somebody encouraging movement that combats the unwanted symptoms. He weighs over 14kg now -- not an easy load on a mother.

With all this going on Megan and I came up with Hopeful Hearts. A platform to help all families with special needs. The platform is designed to help sell goods/services and receive donations on the families behalf. So instead of just creating a website to sell our stuff, we made it so that others can sell from there too... FOR FREE. We understand that these families are already struggling to make ends meet, so why charge them?

From there we are adding forums, blogs and community chats so that people can be encouraged and counselled. The entire concept is driven towards changing lives and making international services more local and locally produced/offered. Treatments, gadgets, training, support to all be more local.

The Hopeful Hearts website is now up and running for a month and already we have huge support coming through on our Facebook page. To get a better understanding of what we are doing please view our YouTube videos.

If you watch all 3 videos (under 9 minutes all together) you will have a better idea of the dream!"

 

Any family with a special needs child that wants to sell goods/services or receive donations can apply here.

For a better idea of what Hopeful Hearts is all about can watch all three videos here.

To find out how you can help Jaden and his family, click here.

This story was submitted to YOU by one of our readers and has been minimally edited.

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