Wheelchairs for the CP Warriors

I asked Dr. Ferdz … which weekend are you free to give out the chairs? The only date that matched in our calendar was 12th of August, Sunday. 

I accepted because she’s very hard to catch and she’s an essential member of the team in my plan to finally give away most of the Wheelchairs-for-Kids that has been sitting in our storage for a little over 3 years now. She’s the wheelchair expert while I, handle the rehabilitation part of the process.

At the same time, I was selecting the kids that can use the wheelchairs. I only have on criteria – that they can sit with minimal support.  I tried to be strict because there are very few chairs to give to the number of children that needs them.  These are wheelchairs that are fitted and modified to the individual needs of the user.

All that preparation was done remotely. It was easy, I had years of training working in Palestine and Turkey! 

The coordinator Miss Holly gave me the information about the kids she recommended. I selected them based on the photos and passed on to my colleague to confirm.  Once we had the list, we were all set to roll the coming Sunday.

A little sacrifice for a slice of heaven 

Thanks to a friend, I was able to link and communicate with a group of advocates who will do anything and everything for their children with cerebral palsy.  The seven kids we chose are of the mixed type of cerebral palsy, the youngest is a 3-year old, and the oldest was a 7-year old, all non-verbal and comes with their unique temperament.

The group is called CPCARES.Ph, a newly minted NGO composed of mostly mothers who met each other in hospitals and rehabilitation centers where they get treatments. They decided to bond together and exchange information on how to support their children and each other and eventually get support like the wheelchair-for-kids I was offering.

The chair has to go, it’s long overdue 

The wheelchair-for-kids was given to me by a colleague from Rotary (WFK, Inc) in Australia. I collected them in Pampanga in 2014 to give to ten children in San Pedro. But life happens to my colleagues and to me (that’s for another story) that we didn’t get the chance to complete the donation of the chairs. I only gave one, and 9 other was stored between my house and another friends’ backroom until I find the time to give them out.

Then my accident happened this year, and suddenly I found myself with nothing worthwhile to do, I started reconnecting with my disability network. During one of my doctor’s visit, I dropped by one of the social department run orphanages (Elsie’s Gatches) in Alabang and tried to find kids that can benefit the chair, we were able to find only one.  The residents are either too old, too big or the disability is severe they cannot control their movements let alone sit without restraints.

After some time, through the mother of Gab, our very first recipient, she got me in touch with CPCARES.Ph and the rest as we say “is history.”! (Read Gabs’ latest story here)

Rain rain go away come again another day … please!

As the day of the activity approaches, a severe weather situation started happening in the metro including our province. The typhoon #Karding, though far from land was sucking the monsoon bringing in non-stop rain, and it’s putting my plans at risk of getting delayed again. I thought if I cannot give the wheelchairs away this time, I will not be able to do it ever!

I became friendly with the disaster alert, and the worst is yet to happen.

The day before the event, on a Saturday, I attended a creative writing course that puts me in the heart of EDSA, our infamous parking lot. And the day prior, I was with friends, and there was no problem with rain, but anything can change typical for this period, so I was confident the weekend will be good.

When I arrived at the workshop venue, the rain had started. I was not worried it doesn’t seem to be strong, I was wrong. At around 2 in the afternoon of Saturday all the mobile phones in the room gave out a unison fog horn sound announcing that the whole of Metro Manila and nearby provinces are on RED Typhoon Warning – it was not good.  There is more rain dropped than what can be handled by the cities and provinces – the worst flooding was imminent.

I managed to go home later that afternoon, risking walking in the rain and puddles and running after buses because I will have to get ahead of the situation.  Had I delayed even for 10 minutes I would have slept in one of the hotels nearby and not go home for the event. 

Image result for flooding in august 2018 manila Image result for flooding in august 2018 manila Image result for flooding in august 2018 manila    Image result for flooding in august 2018 manila

(Photos above are from the internet – it was what I escaped when I decided to hop in the bus to go home).

I was also on high alert. Continually checking the weather report and updating the coordinators.

My colleagues whose coming from the metro contacted me asking if the event is pushing through because people are being evacuated as the night progressed and there was a risk of the dam breaking or one of the big river overflowing if the rain continues overnight threatening more flooding.

All through the night, I was glued to the news telling people that if the situation doesn’t change I will advise postponing no later than 5.30 in the morning of Sunday. I was praying hard before sleeping, praying that when I check the news, I will have good news.

Good news indeed, the sun had shown its face … finally! 

I knew it, the moment I woke up, I know it’s a go. The RED warning was lifted, but it left significant devastation in the whole of the metro, where half of the kids and my colleague was coming from.

With God’s providence, all came, and nobody was affected by the massive flooding even if they lived in the area that was underwater. God really want these kids to get rolling in their new chairs, rain or shine.

One by one they arrived at the venue, and one by one the chairs were assembled. All hands were on deck, anticipating 3-hours each chair including fitting and adjustments, we needed to hustle.

After assembly, each kid was fitted in the chair while adjustments were made by mostly their dads. The moms were busy taking care of their kids until they are needed to sit and fit in the chairs.

Since the venue that was lent to us, thanks to another friend, was indoor we were not affected by the afternoon rain that continued to pour. It was less troublesome than it was the day before, and each one of them brought their own transport I was not worried they cannot go home with their chairs or get the chairs wet.

We finished in good time and was able to give out all the seven chairs without a hitch and immediately they were a hit to the kids and especially to the parents who witnessed the transformation of their child the moment they sat in their new and appropriate Wheelchair-For-Kids.

I think God was happy with what we had accomplished that day that the rain stopped altogether after.

Gabriel and His Wheelchair

I did something of my time last Friday. I went out and met (again) the community I wanted to give some of the wheelchairs I sourced from an organization in Australia and I went to visit Gab and had someone with me to check him and his wheelchair two years after we gave it to him.

(Dhidhak Collection / Philippines 2018)
I am with a colleague adjusting Gab’s chair. On my feet half the time … I was tired but went home happy! (Dhidhak Collection / Philippines 2018)

Gab is 8 years old last Thursday. I met him in 2014 together with his mom when I joined the local disabled people’s organization in my city. I offered my skills to help but my work does not allow me to fully commit to it. His mom and I continue to communicate. She contacts me when she has questions about Gabs condition and for some other pieces of advice.

He was born with cerebral palsy. He has spasticity on all of his extremities and he has difficulty to communicate. All his 8 years have been supported by therapy whenever money and professionals are available but he still cannot walk but he loves to be around people. So a wheelchair would be very good to have for him to be mobile and social and wheelchair he got two years ago!

(Dhidhak Collection / Philippines 2018)
Gab and his chair of 2 years were recently adjusted. He’s happy to fit well in his chair and to be outside (Dhidhak Collection / Philippines 2018)

When he was 6-years old, I managed to get ten wheelchairs I was hoping to give to children like Gab. At that age, his parents are already complaining that it’s becoming difficult to move him around and the DIY chairs they built him doesn’t offer much support.

He is lucky because his family makes time for him, you can feel a happy family around him when you visit, they seek help and save up for some therapy, while other children have no opportunity to access health and rehabilitation services, no caregivers and often no knowledge of their human rights. I saw many with deformities that cannot be improved anymore, let alone sit in the chair. Some, there’s hope if parents can be given the training on how to manage their child’s conditions if they cannot afford therapy and transport.

(Dhidhak Collection / Philippines 2015)
Immediately after he received a new chair, Gab was able to participate in different activities for children with disabilities that summer. (Dhidhak Collection / Philippines 2015)

What has changed?

When I met Gab, he was smaller. My colleague who made most of the technical adjustment had to adjust his seat depth and more to accommodate his long legs. I also noticed how talkative he has become, although he was talkative then, this time I can understand them more and being able to carry more conversation with the small vocabulary he has. But he also has a shorter temper, which I think was because of the weather (summer temperature reached 35C that day) and being cooped in the house instead of going to the park.

Gab even has his own facebook page!

He follows instructions better. When we asked him to sit straight and put his neck straight, he can do it. He has better trunk control, I guess the time he can have the straight posture would determine his progress together with other activities. With the table attached to the chair, he interacts more with the people around the house, increasing his ability to use his hands. Feeding too has improved, and I noticed no drooling compared to the first times I met him. He will need continuous therapy, but I am happy with what I saw.

I even saw photos of him playing badminton with his siblings and had gone swimming with the family this summer.

What’s next for Gab and for the remaining chairs?

Experts say he needs to be re-evaluated together with his wheelchair. A 3-wheel type chairs that have hip, trunk and head control (depending on the design). The Wheelchair For Kids, Inc. produces these type of wheelchair. The organization is made up of a group of retired volunteer members of the Perth metropolitan community in Western Australia, and they donate these type of chair all over the world.

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Gab is featured in WFK website collage and see how small he was back in 2014 (Screen grabbed from WFK website)

I don’t exactly remember how I got to know WFK, but I remember it was during the time I was in East Timor. Later, when I returned home, I contacted WFK, Inc. and inquired whether they have links with a local organization here in the Philippines where I could get access to their wheelchairs and distribute to the children in San Pedro City.

No, they don’t have specific local partners in the Philippines, but they have better links – the RSL Angeles City, a sub-branch of Returned and Services League of Australia. They send wheelchairs to them and distribute them to children in Angeles City and neighboring province (which is in the north part of the Philippines). They suggested I contact them and request the 10 chairs I was asking them.

I made contact with RSL, after some negotiations, they agreed, and I picked up the chairs. Unfortunately, I only managed to give out 1 out of 10 chairs. For many reasons but one of them was me being called off to join an emergency mission in Nepal. Partly I am to blame for the delay, but I have a pretty good excuse why the delay but don’t worry, I already arranged with someone with technical knowledge on the wheelchair and good network in the disability sector, we hope to give out those chairs in the next three months.

This time, being ambulatory, I tried to revive the project and give the remaining 9 chairs to the rightful owners. I made contact again with experts in the field, and with their help, I would be able to reach out to those kids that could use this type of chair for their everyday lives.

So I ended the day tired, with a swollen ankle but went home happy. The feeling of not being able to do anything worthwhile had faded over the weekend knowing that I will have something to look forward to in the coming days. For now, I will focus on Gab and see how much more we can still improve his chair and until when we can keep him using them until we need to find him a new one.

Postscript:

If you want to know more about disability and how you can help get children appropriate wheelchair send me a message here! Thank you in advance.