Special needs is a luxury: stigma on fund-raising for medical treatment.

1st August, marks the day when a group of amazing friends led by Yaa decided to raise money towards Giovanni's treatment through a walk. We are forever grateful for people like these with such warm and big hearts. It showed me that people really do care when you reach out to them and people want to help. We would be nothing today if it hadn't been for all those people (family friends and others) that came out to support us that day and the money has gone a long way in Giovanni's treatment.



Medical treatment for long term illnesses can be expenisive and therapy which helps Giovanni so much can also be super expensive. I came across an announcement today of a training Programme for parents with special needs kids: it's a one day workshop that includes snack, lunch and a certificate for an amount of 250 Ghana Cedis for the day. Now in Ghana, this is expensive for a programme that will only last a few hours and that has more to do with your daily living experiences. Now I'm wondering, why would I come sit at a programme for just a few hours to be taught things about a child I've been living with all his life? If anything I'm probably the one to share experiences with these facilitators.

When it comes to anything to do with special needs it seems to cost an arm and a leg. Physiotherapy at home is about 100 Cedis ($25) an hour, equipment for physio is soaring, special needs schools in Ghana are about $1500 a term and so we choose to keep them at home. Special needs has become the new luxury. When we took Giovanni to India, physiotherapy was $10 an hour. Now I can only speak for Ghana, as I live here and can tell you my struggles even when purchasing things online for my son: there is a huge gap in this society concerning the development of special needs children...an unfortunately and overwhelmingly huge gap; and the little we are left with is super and exorbitantly expensive.



Is it the assumption that parents with special needs children are rich? I really don't know... I feel just like other human beings enjoy their comfort, children with special needs should not have to pay so much for comfort, care and education. I understand that there is a different dimension and the fact that care costs extra but how about the equipment to enable them get better? Why so expensive? And why are people having workshops that cost an arm and a leg about things I can learn on my own through the experience of my child and also through the internet?

I went to a workshop very recently organised at the Accra Physiotherapy Centre and it was absolutely free. I attended and I was able to meet other parents and also learn a thing or two from those that have been caring for special needs children for several years. It was indeed an eye opener. Why can't people or NGOs organise more and more of these?

I would like to encourage anyone holding a workshop on special needs that focuses on parents especially in Ghana to try as much as possible to keep them at a low cost; especially for we parents who have extra costs for their children (having a nurse/carer at home, frequent hospital visits sometimes outside the country, physiotherapy at least twice a week, medications, and special equipment to facilitate their daily living). I would rather keep my money and spend on these things than to sit at a workshop which I might not benefit from. 

some friends at the Walk

When Giovanni was diagnosed and it was obvious we as parents couldn't afford his medical treatment, we decided to pursue a fundraising campaign to help us pay for Giovanni's medical treatment. I received a lot of criticism and backlash for this. You see, in my part of the world asking people for money is seen as shameful. When you ask for money, it is seen as begging, people are afraid to give because they do not believe you would use it for the purpose you actually say you would. The backlash did not stop me from raising the funds. For my son, I would do anything to keep him alive, which includes raising funds for his medical care.

I always thank God for the initiative friends took to raise money to help pay for Giovanni's medical expenses. You have abosolutely no idea how that money has gone a long way to help Giovanni. All the doctors we see, all the medication we buy is thanks to the money donated by both people we knew and didn't know. We were amazed by all the love and generosity people showed us. And now, some of the money will also go into purchasing equipment that will enable him to walk. My husband, my family and myself are super grateful for this.

Let's not be ashamed to raise funds for sick family members or sick friends, we are all human and it's only normal if you cannot afford health care especially for life long conditions. Be it cancer, muscular disorders, surgeries, we should all do our little part in helping others whichever way we can. It doesn't even have to be a monetary donation, a simple prayer or words of motivation always help. 

I pray people especially from my side of world will stop seeing fund raising for medicals as begging and I wish more people will do it especially when it can save a life.

We are off for a medical review, wish us luck and pray for us so we find a good treatment plan for our angel!

 Click here to watch the Video of the Walk on 1st August 2015