The lack of updates as of late is indicative not of the lack of progress being made for The Patience Project, but rather of my struggles with communication. But as such, a full progress report is in order. It’s hard even to know where to start, as so many things have been happening!
As many of you know, I released an EP (a half-length album) called “Fireweed” on January 8th. I recorded it in Alaska in the summer of 2015, immediately after my last trip to Ghana, and one of the songs on it is inspired by Patience herself. Anyhow, the reason this is relevant is that a portion of the sales goes to The Patience Project; a huge thank-you goes out to my family and friends who attended the release concert and supported the project. As a musician, it’s indescribably rewarding to share your music, but to be able to combine the two things I care about most has been a dream come true. Please check it out and share it with everyone. You can download a copy here (oliviariogodby.bandcamp.com) or you can shoot me an email at firstname.lastname@example.org if you would like me to mail you a hard-copy.
But as for the inner workings of the project, let us begin with the children. I have been Skyping with Carrie, who has informed me that they are all making great progress in their physical therapy. Both little Etornam and Nina, who could not so much as sit up on their own over the summer, can now sit up for a few minutes at a time. Though this does not sound like a lot, this is a major step!
We also have several new children who have begun attending physical therapy,several of whom Carrie and Ford met at prayer camps in the area, for prayer camps are often seen as the primary way to heal a disability. It is very encouraging, however, that these families have also been so receptive to the support of The Patience Project in getting their children into physical therapy. One of our new little ones, a three year old girl named Theophilia, is very close to walking, much like Gloria was over the summer. I really look forward to meeting her when I return and seeing her move forward.
Additionally, we have several children for whom nutrition has been a major obstacle to physical health of any kind, so Carrie has been working to develop a simple and cost effective nutritional packet that can be given to families. It seems to be working, too, for not only have some of the children already experienced much needed weight gain, but the nutritional packets have gotten the families talking to each other about the importance of diet for the children. According to Carrie, nutrition has now become a topic of fervent discussion in some of the parent self help groups!
We are also happy to report that, with the faithful coordination of Kodzo Dickson and the Kekeli Foundation, we have completed the ramp-building project at the school for the deaf in Hohoe. As the ramps proved to be a little steep, we also funded the building of accompanying railings, and they look beautiful (and are functional, too)! According to Dickson, the students and the staff at the school have been endlessly expressing their thanks, so I’m extending that to all of you. Let’s make it happen again.
Justine, who received her heart surgery in September, is healing wonderfully and is adorable as ever, which is exciting news for one of our other children, Sedem, a three year old boy with Down Syndrome. Sedem will also need a heart surgery, but it is one that cannot be done in Ghana. As such, he will need to go to India to get the surgery, as India is the cheapest and most reliable option (we also looked into South Africa and the US, but both proved either much more expensive or had too many immigration issues). The surgery should run something around $12,000, and though this is a hefty sum, it is very important that we support Sedem through this on a variety of levels. Not only will this surgery allow Sedem to grow into the healthy and vibrant person we know he can be, but moving forward this surgery sends a broader message. The reality is that Sedem lives in a society that, more often than not, does not value persons with disabilities. As Carrie related to me, often, children without a disability such as Down Syndrome would easily be able to find people to support the cost of their surgery, but children like Sedem don’t have such luck. By supporting his surgery and publicly expressing our belief in the inexpressible value of his life, we can support the work like that of the Kekeli Foundation in advocating for the incredible capabilities of a largely overlooked population. My hope is that by raising money for Sedem, we will also be able to raise money to support the other children, for whom annual costs amount to around $200 (and yet this money goes SO far). Here are some great photos of Sedem, and there will be much more on him to come!
Finally, an exciting new project is beginning to take shape, and it is one that is very much in line with The Patience Project’s commitment to sustainability by helping people help themselves. This means that if any change is going to happen, it must come from within the communities, and we can be facilitators in helping that to happen. In order to do this, Carrie and I are working with a physical therapist in Ho to plan trainings for health workers in physical therapy, specifically as it relates to children with disabilities. Likely how this will take shape is by getting together a small group of Ghanaian physical therapists to develop a training manual, which can then be used to train workers in various communities throughout the Volta Region (and beyond!). By having community members who can identify new cases and enact early intervention, there are so many good things that can happen, from immediately getting the child into physical therapy to helping the family find the appropriate resources should more assistance be needed. This is one of the projects I am the most excited about because the long term impacts are such a step in the right direction. I look forward to updating everyone more on this!
For now, stay tuned and stay active; never take your health for granted!