Dollars For Development – Where Exactly Did Your Donations Go?

A couple weeks ago I had a meeting with Samarthya director Hampanna to discuss the $9100 raised through our Dollars For Development campaign ($9100! That’s incredible!). Now that we’d seen how Samarthya operates and where the needs exist, Maegan and I talked where we felt the funds would be best assigned, and so here’s how they will be allocated over the next year:

1) Community Disability Clinics, Early Intervention Centre and Home based service for Children with Disability:  This includes educational toys and supplies to help children with Cerebral Palsy, Cognitive Delay, Spina Bifida, Autism, and other disabilities.

Additionally, we wanted to purchase more mats for the Early Intervention Centre, and invest in a photocopier for the office so the workers would be encouraged to draw home exercise sheets and provide written recommendations for the families.

2) Support for Medical Interventions / Further Referrals: This includes financial assistance for low-income families towards advanced assessments, treatments, and follow-up consults with specialists such as neurologists and orthopaedic surgeons.

Samuha can also aid families with surgery costs (for example, a hamstring release), transport to and from the city (usually Bangalore), and staff support (so a local worker can accompany the family to the appointments to assist with the discussions and decision-making).

3) Aids and Appliances: This contributes to the funds needed to fabricate orthotic & prosthetic aids, seating chairs, wheelchairs, tricycles, callipers, standing frames, commodes, and splints. We met with orthotic technician Muttana who requested some support to purchase a lathe, vacuum for splinting, and another drilling machine for the workshop.

4) Administration:  Other expenses associated with implementing and allocating these funds, i.e. accounting, audit, office/building expenses, telephone, transport and other utilities. This will be roughly 10% of the total donations.

We also took the liberty of donating a small amount to some of the families on our caseload for specific needs, like the one family of three children with muscular dystrophy who needed a wheelchair and writing tables… this still falls under #1 above, its just so nice that we were able to make that decision on the spot and help a special family that we worked with directly.

To give you an idea of how far this money will reach, $9100 = over 500,000 rupees. A pair of splints cost about 400 rupees, and a new wheelchair is 10,000 rupees.

Thanks again to everyone for their financial and moral support, and for spreading the word about our campaign. It will really make a considerable difference in so many lives.

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The Early Intervention Centre will be able to purchase a few more paediatric-sized two-wheeled walkers like this one

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The DFD funds will also go towards materials such as plywood, splinting plastic, plaster casts, and tools

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The fundraising money will also go towards supplying children with splints like this one, or showing a village carpenter how to make this simple version of a walker

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K-Tape: Kid-Kompatible

Another supporter of Dollars For Development was OrthoCanada. At Kids Physio Group, I often use a fabulous brand of athletic tape called K-Tape, which OrthoCanada supplies and SportMed Retail Group in Vancouver carries. This tape is made of woven cotton that has properties allowing it to stretch, move, breathe, and resist water – this works great on active kids as it’s so resilient! There are many brands of this stretch tape available, but I’ve personally found that K-Tape has been the most durable and resistant to tearing (especially when placed on max stretch).

At a home visit off the Samuha Samarthya campus, Hilary and I assessed a 4-month-old infant with spina bifida – a condition where the neural tube and spinal canal don’t form properly due to lack of folic acid and as a result the spinal cord protrudes from the back of the baby; functionally it presents as a spinal cord injury and will affect the child throughout his life. This baby had a surgery to close the tube when he was one day old, but still suffers several issues. Often, spina bifida is associated with hydrocephalus (enlarged head due to excess brain fluid) and/or club feet (congenital deformity of the foot bones). Luckily, this baby only had moderate clubbing of the feet – in the rest position, the toes all point towards each other but it was correctable, i.e. there wasn’t a contracture of the tissues of joints… yet.

We felt that hard plastic splints/plaster casting weren’t warranted for this baby yet, but he needed some sort of support to prevent contractures from forming until he started weight-bearing and standing. OrthoCanada had generously donated two mega rolls of K-Tape (each roll equal to five small rolls), so I wanted to give that a try.

Here comes the physio jargon: I used a standard eversion support taping technique, applying tension from medial to lateral, but anchored my first strip diagonally on the plantar aspect of the hallux to include support for the metatarsals (as he had some metatarsus adductus as well). The result: a much more neutrally-positioned foot which would prevent medial ankle capsule tightness from developing! Note, I forgot to get a ‘before’ photo, but here’s a close comparison to what this baby’s feet did look like:

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Photo from newyorkfootexperts.com

We applied the tape and here’s what his resting position was like after:

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We taught the family how to apply the tape as well, gave thorough instructions to check the skin and use oil to remove it painlessly. Because of our generous supply of tape, we were also able to give the family a few weeks worth to use at home. Thanks OrthoCanada and K-Tape – this really made a difference in this baby’s life 🙂

Family Focus (squared) – Muscular Dystrophy


At Kids Physio Group in Vancouver, I have treated close to 300 different children and have only seen a spatter (maybe two to three) who have had a diagnosis of muscular dystrophy (MD) of any kind. For those not in the medical world, muscular dystrophy is an umbrella term for a group of conditions that are characterized by a weakening of the body starting at the muscle cell level. There are many types of MD; some types are non-progressive and these children work very hard to gain as much strength and function as possible. Other types are unfortunately progressive, as these children often develop normally and then experience difficulties such as tripping and falling in later childhood. Some types are so quick to progress that they are heartbreakingly fatal.

Genetics 101: In reproduction, there are 23 total pairs of chromosomes (the molecular strings of DNA), one of those pairs determines the sex of the baby: X + X = female, and X + Y = male. In one of the more common types called Duchenne’s Muscular Dystrophy (DMD), the mother is often the carrier of the gene and doesn’t show any signs, and then passes on her X gene to any sons who will then express the disease. For the visual learners out there:

DMD chart

DMD is a fairly rare condition with an incidence of 1/3600 boys and is even rarer for girls (stats actually unknown due to rarity, we’ve read that the carrier genes can be activated due to other cell functions). The genetic combination results in a mutation of the dystrophin gene coding for a main muscle cell protein. The result is progressive damage and fat infiltration into each muscle cell and an inability to repair itself, leading to a non-functional muscle. First those muscles closest to the trunk are affected, and as the disease progresses it affects limbs, lastly affecting the hands, face, and cardiorespiratory muscles eventually ending life around 20-25 years of age. It’s an awful disease.

Now that the genetics lesson is complete, let me introduce you to two amazing families with rare genetic odds. The first family has three children: Mustafa (12yo, boy), Gousiya (10yo girl), and Abdul (8yo boy). These happy and smiling kids live with their mother in a family member’s house, as their father passed away a few years ago and they have no property of their own. Upon seeing the functional level of these children, we knew that Samuha intervention would greatly improve their lives: Mustafa and Gousiya can no longer walk, and rely entirely on their mother to carry them from room to room. Abdul currently is toe-walking and is no longer able to run, and as the disease progression happens in specific stages it will only be a matter of years before he will be immobilized like his older siblings. Because of the timing and presentation (i.e. tripping and falling around 5-6 years old, no longer walking by 10, etc), all three of these siblings appear to have Duchenne’s Muscular Dystrophy.

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Mustafa, Abdul, Gousiya and their mother in front of their house

The second family lives in a gorgeous farming village called Hati. Sachin (11yo boy), and twins Krishna and Praveen (8yo boys) live with their large extended family in a small cluster of houses, each of which has a stable large enough to hold four cows in their living room. No joke – we actually did the consult while the cows were pooping right beside us.

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It’s the definition of a ‘multi-purpose room’

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Sachin

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Praveen and Krishna pictured here with their father at our first meeting during a government clinic day held at a local school

This family is miles from the first family and are totally unrelated to them. Sachin no longer has any function other than sitting in a very poor posture and moving his hands, and the twins are barely walking and can hardly get up off the floor. Looking at their presentation, all of these three siblings also have muscular dystrophy that clinically looks like the Duchenne’s form. ***It is important to note that Duchenne’s cannot officially be diagnosed without genetic testing, but that is rare and expensive here so it’s not an option for most families***

Our plan for intervention was similar for both families:

1) Educate the extended family members on muscular dystrophy and the lack of a cure; the second family had been spending money on bringing the boys to a village ‘bone healer’ who rubbed ayurvedic oils on their ankles and wrapped them in odd bandages promising that the boys would walk in a few months with continued visits…

2) Plan for a all-terrain three-wheeled wheelchair so that the parents could safely push their children to school rather than carry them. When Mustafa and Gousiya sat in the chairs for the first time, huge smiles spread across their faces when they realized they could propel themselves around effortlessly!

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Mustafa and his new wheels

3) Request the workshop to build small tables, only 8 inches high, so that the children could stay sitting cross-legged on the ground but didn’t have to do their homework or eat on the ground. Gousiya actually has a fairly severe scoliosis due to asymmetrical leaning forward to write on the floor. One of the German volunteers, Liander, designed and constructed a beautiful table that the children loved!

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Gousiya and her new table where she can do homework and draw – she’s quite the artist!!

4) Create a resting/stretching splint for the still-ambulatory children to try to provide a more functional ankle position for the inevitable contractures that will occur

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Abdul getting casted by Liander for a stretching splint

5) Teach the family very gentle stretches for hamstrings and calves, as well as range of motion exercises to prevent joint contractures. Sachin (11yo boy) was one of the worst cases we’ve seen – he had no medical management to this point and had very painful and contracted hips, knees, and ankles because he had just been sitting cross-legged (no walking or any other activity) for the past year.

Local worker Prabhakar teaching range of motion for Sachin's very contracted joints

Local worker Prabhakar teaching range of motion for Sachin’s very contracted joints

It was unlucky genetics that led to these two rare stories of muscular dystrophy affecting all children in a family. Samuha is doing wonderful work here in South India for families like these who would otherwise have no intervention. Thanks to the funds we collected with our Dollars For Development campaign, we were able to gift the wheelchair and table (total $150) to the first family who had no real income. It felt so good for us to be able to give them the gift of mobility!!

Family Focus – Annita

January 9, 2013

Yesterday, we travelled 30 mins by jeep through bumpy roads to a nearby village, Kinnal, to do a consult clinic at the Public Health Centre (PHC). We caught many moments in action on the road.

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The PHC is a government run facility that currently has one physician and 3 nursing staff to cover the surrounding villages of 12,000 people. When we arrived, there were over 25 women in various stages of motherhood, many carrying small infants, to see the doctor. We set up shop in a very small back room (about 100 square feet) where Hampanna (the Samuha director), Ayallapa (disability worker) and two other workers, Leon (a german highschool graduate staying at Samuha one year to volunteer adapting homes for the disabled), Maegan, Marcia, and myself. Add 8 patients and two accompanying family members each: this made for one very, very full room.
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A wide variety of children came through the clinic:

–  10-year-old boy with hearing issues
–  6-year-old girl with cognitive delay (query Autism Spectrum Disorder), congenital cataracts
–  12-year-old boy with vision issues – nystagmus
–  2-year-old boy with left arm hemiplegic cerebral palsy (CP)
–  5-year-old girl with right arm and leg hemiplegic CP
–  4-year-old boy with spastic diplegic CP affecting both legs
–  10-month-old baby boy with quadriplegic CP (who we actually saw at Samuha the other day)
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–  Lastly, an 11-month-old baby girl, Annita, with a severe cleft lip and palate, who’s cheery personality pulled at our heartstrings!
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Annita is an otherwise healthy, happy, and busy baby girl, who is physically developing very well. She was energetic and interactive, crawling and bear walking everywhere to play. Currently, She’s awaiting surgery to repair her lip and palate, and one of the pre-requisites is for her to weigh at minimum of 7 kilograms. When she was first assessed a while back, she weighed 4kg… yesterday at the PHC we sat her on the scale – she clocked in just under 6kg! Looks like she’ll have to wait a few more months.
As is the case with many of our patients, Annita is from an incredibly low-income family. The village farmers work in the field just enough to provide food for their families and nothing further. Annita will require two separate surgeries, one to repair the lip, and later another one to repair the palate. The combination of these privately-funded procedures typically costs about 40,000 rupees (~$800). Because of all the good work Samuha has been doing in the communities around Koppal, they have established positive working relationships with some of the doctors and facilities in the state. A Samuha-associated hospital subsidizes the procedures by 50%, meaning the cost for Annita is now closer to 20,000 rupees. This includes the cost of the actual surgery, the travelling and food expenses for the family to go to the hospital (often several towns away), and a Samuha staff member to accompany the family to help with medical discussions and field many questions.
How could the family possibly save enough to afford this much-needed surgery? If they didn’t, she would have issues for the rest of her life with speech, feeding, and of course socializing with her peers. We discussed the plan for Anita, and Hampanna said that Samuha will be able to provide the funds required for Annita to have the surgery! I was so happy to express to Hampanna that we wanted some of the money we collected from Dollars For Development will go towards the Medical Procedures fund to help Annita and other children like her.

Fit By Francis Bootcamp Fundraiser – Success!

December 9, 2013: It was a cold and blistery Monday night in Vancouver, yet 14 faithful supporters of Dollars For Development walked, drove, sky-trained and bussed to Groundwork Athletics Inc. on Granville and Georgia for our fundraiser bootcamp class.

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After some introductions and a quick warm up, we were ready to have Francis Dos Santos of Fit By Francis run us through an energetic workout filled with a wide range of exercises! After a quick explanation, we started with some lunges to warm up:

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He followed that up with a circuit with some bosu agility exercises as well as burpees to get our hearts pumping:

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The second circuit included some active planks on the bosu and resistance work with the bands:

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Everyone loved the 30-second intervals of jump squats:

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And we topped off the night off with some core burners!

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Thanks to everyone’s donations, we raised $255!!! We are so thankful to everyone that came out to support Dollars For Development, and to Francis for starting our week off with a great exercise session! Thank you to The Secret Tea Garden Company for their goodie bag, Simple Soap for aromatic samples, and Matchstick Coffee Roasters for coffee and gift certificates for door prizes!

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We’ve now blown past our original $5000 goal, and Dollars For Development sits at $8310 – We’re overwhelmed by everyone’s support!

#DollarsForDevelopment and #GivingTuesday

#BlackFriday has come and gone, #CyberMonday is here in a few short hours. After a weekend traditionally associated with sales, shopping and splurging, a new day has been created to bring awareness to social issues and good causes – #GivingTuesday is coming to Canada for the first time this year!

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“It is a new Canadian movement for giving and volunteering, taking place each year after Cyber Monday. The “Opening day of the giving season,” it is a day where charities, companies and individuals join together to share commitments, rally for favourite causes and think about others.”

http://www.givingtuesday.ca

I’m happy to share that #DollarsForDevelopment has been approved to be a part of Indiegogo’s #GivingTuesday initiative! For every $20 that our campaign receives on Tuesday December 3rd, Indiegogo will donate $1!

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AND THE CHERRY ON TOP: Kids Physio Group has committed to matching Indiegogo’s contribution, which will multiply the effects – we will now get a bonus of $2 for each $20 that we receive on Tuesday! I am so fortunate to work at a clinic that is so supportive of this endeavour that Maegan and I are so passionate about!!

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Please take part in this day of giving. If you’ve been thinking of supporting #DollarsForDevelopment in our quest in improve rehab services for kids in South India, Tuesday December 3rd will be a great chance to maximize your contribution 🙂

We’re at 90% of our $5000 goal!

http://www.indiegogo.com/projects/dollars-for-development/x/4806314

Taking Care of Business

42 DAYS LEFT! We’ve checked off the most important things on our to-do list:
Errands

– Fill out paperwork and consult at the Vancouver Coastal Health Travel Clinic to ensure all of our immunizations are up-to-date: Check.

Purchase DukOral to arm us (as much as possible) against the inevitable traveller’s diarrhea: Check……. But we’ll get sick anyways. Boo.

– Search frantically on every discount flight website out there for the best deal on flights to Bangalore…Thank you kayak.com! Simultaneous online bookings to ensure adjacent seats – Boom. Check.

– Take stoic (mugshot) photos, get confused at the Indian Consulate, and wait in multiple lines to obtain our travel visas: Check.

Andrea to find a locum to cover her overly-full caseload at Kids Physio Group so her clients continue to receive steady physio treatment during the 5 weeks that we’re away: Check. Thank you Susan Moriarty for being so keen!

Now… FUNDRAISING! Our Indiegogo campaign is well on the way, raising money to purchase therapy supplies, equipment, and ensure employment of the local rehab workers. Currently we’re at 25% of our $5000 goal. Several sponsors such as Valley Orthocare and SportMed have stepped up to donate splinting supplies and exercise equipment, respectively. Wow – so encouraged by the support and generosity of local businesses!! Thank you also to all of our friends, colleagues, and family who have spread the word about our cause so far 🙂

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If you haven’t yet, please be sure to check out Dollars for Development at http://www.indiegogo.com/projects/dollars-for-development/x/4806314 . Please help us make a difference in South India!