Seva Canada: A Solution in Sight

Today’s Globe and Mail newspaper featured a front page story by Geoffrey York about Peter Ash and the work he is doing to raise awareness of the slaughter of people with albinism in Tanzania.

Peter, a BC businessman who has albinism, founded a charity called Under the Same Sun. He has worked tirelessly to get this grim story in the news and to press the Tanzanian authorities to do something about these horrific crimes. I remember him telling me that when he went to Tanzania to visit victims and meet politicians, people would call out to him the dreaded words “Dili dili” — a direct threat that he  might be killed for his body parts to make witchcraft “get rich” potions. He and his brother must travel with bodyguards when they go to Tanzania.

Peter Ash and Under the Same Sun have supported Seva Canada’s work with children in Tanzania by funding three  shipments of children’s eyeglass frames to Moshi. In fact, the next shipment is due to be sent by KLM Cargo and Worldwide Animal Travel this Thursday.

As the Globe article stated, people with albinism usually have poor vision. Where Seva works in eastern Africa, there are many children with albinism in the blind schools as well as adult patients with albinism who come to the eye clinics. Recently, Dutch photographer David de Wit took these images of children with albinism at the the blind schools.

For a what is supposed to be a rare eye condition, I’ve heard way too much about retinoblastoma cases lately.

Just the other day an ophthalmologist friend in Vancouver mentioned seeing a case and today we got a story of a little boy in Nepal who suffered from retinoblastoma.

Retinoblastoma is a rapidly developing cancer which develops in the cells of the retina, the light detecting tissue of the eye. Retinoblastoma is rare and affects approximately 1 in 20,000 live births. Untreated retinoblastoma is almost always fatal; therefore, early diagnosis and treatment is critical to saving lives. In the developed world, retinoblastoma has one of the best cure rates of all childhood cancers (95-98%), with more than nine out of every ten sufferers surviving into adulthood.

There are two forms of the disease; a genetic, heritable form and a non-genetic, non-heritable form. Approximately 55% of children with Rb have the non-genetic form. If there is no history of the disease within the family, the disease is labelled “sporadic”, but this does not necessarily indicate that it is the non-genetic form.

In about two thirds of cases, only one eye is affected (unilateral retinoblastoma); in the other third, tumours develop in both eyes (bilateral retinoblastoma). The number and size of tumours on each eye may vary. In certain cases, the pineal gland is also affected (trilateral retinoblastoma). The position, size and quantity of tumours are considered when choosing the type of treatment for the disease.

Himal, age 5, from was brought to Seva’s partner hospital, the Lumbini Eye Institute by his grandmother on February 1st with a history of no vision in his left eye.

The family hadn’t noticed that the boy was blind in one eye until a week earlier when they were watching TV and the little boy’s right eye was itchy so he covered it temporarily.

Himal, age 5, is examined and diagnosed with retinoblastoma in his left eye. Photo courtesy of Seva Canada

The family immediately took Himal to the local health post in a nearby village and the staff there referred him to the Lumbini Eye Institute. After a detailed examination, Himal was diagnosed with retinoblastoma in his left eye.  The pediatric ophthalmologist was unable to restore the sight in the boy’s damaged eye, but was able to save the child’s life by removing the left eye.

It is vital that children receive eye exams. The most common and obvious sign of retinoblastoma is an abnormal appearance of the pupil. Many parents refer to this reflection as “cat’s eye” or “white eye”.  Medically, it is known as leukocoria. Other less common and less specific signs and symptoms are: deterioration of vision, a red and irritated eye, faltering growth or delayed development. Some children with retinoblastoma can develop a squint, commonly referred to as “cross-eyed” or “wall-eyed” (strabismus). However, retinoblastoma presence with advanced disease in developing countries and eye enlargement is a common finding.

Screening for retinoblastoma should be part of a “well baby” screening for newborns during the first three months of life, to include:

• The Red reflex: checking for a normal reddish-orange reflection from the eye’s retina with an ophthalmoscope or retinoscope from approximately 30 cm / 1 foot, usually done in a dimly lit or dark room.
• The Corneal light reflex: checking for symmetrical reflection of beam of light in the same spot on each eye when a light is shined into each cornea, to help determine whether the eyes are crossed.
• Eye examination: checking for any structural abnormalities.

Treatment of retinoblastoma varies from country to country. The first priority is to preserve the life of the child, then to preserve the vision and thirdly to minimize any complications or side effects of the treatment. The exact course of treatment depends on the individual case and will be decided by the ophthalmologist in discussion with the pediatric oncologist.

The process of removing an eye while leaving muscle tissue intact is known as enucleation.  For many cases of retinoblastoma, and particularly unilateral cases, enucleation is considered the primary treatment.  Removal of the eye in unilateral, non-heritable cases is curative.  While the child will suffer some peripheral vision loss as a result of the removal of an eye, the risks associated with attempted treatment, including spread of the tumor beyond the eye, are generally viewed as too great.  Removal of the eye also spares the child invasive chemotherapy and its inherent risks.  Bilateral cases of retinoblastoma, because of the threat of complete vision loss, are often treated more aggressively.  An eye is generally removed only if there is a significant threat of the tumor spreading beyond the eye.

Eye care for children, including school screening, are essential parts of all of Seva’s sight programs. You can support Seva’s work providing eye care for children by making a donation. Himal has lost an eye, but his life has been spared.

The story of Tsultrim Dorje
by Dolma Chugi, Seva Tibet Staff

“I asked the doctors to take my eyes out and exchange them with Tsultrim’s many times, but they kept telling me that such a medical technology wasn’t invented,” confessed Tsultrim’s grandmother. She would gladly have given her precious sight to her grandson and spared his parents, his aunt and herself the many tears they have cried in the past three years. She is pictured here on the far right with Tsultrim and his aunt. Worrying about his eye health has aged her beyond her 68 years.

Tsultrim Dorje with aunt and grandmother

Tsultrim lives mostly with his grandmother and his aunt because his parents work long hours. They only have time to be with him occasionally on weekends and during their holidays. His mother works as a bathroom cleaner at a hotel and his father is a porter. Together they earn only US $192 a month and that has to feed and support Tsultrim, his grandmother, his aunt and themselves.

For three years, Tsultrim’s father lived with the nightmare that Tsultrim’s blindness wouldn’t be treated and that he wouldn’t be able to go to school like all the other children. He shared his fears with me and, after rolling his eyes for a few seconds, he said “You know, nowadays, no schooling means no academic degree, and no degree means no life!” His voice trembling, he continued, “Tsultrim is my only child. The devastation of his life is the tragedy of my life!”

Tsultrim Dorje after his cataract sugery wearing his aphakic glasses

Tsultrim had his first surgery on one eye when he was only four months old. Ever since, he has been terrified of hospitals and doctors. His most recent surgeries were performed by Dr. Judy Newman, a pediatric ophthalmologist and volunteer from the USA. Dr. Newman has been a pioneer of pediatric eye programs for Seva in Tibet. She remembers Tsultrim very well because he cried the loudest and hardest throughout every visit, from registration all the way through examination, vision-checking, eye drops and surgery. He even cried during follow-up visits.

Cataract management for children is more complicated than for adults and, as a result,
Tsultrim has already undergone three surgeries. Intraocular lens implants are not recommended until the age of nine when ophthalmic nerves are better developed.  Now, at last, after all the crying and struggles, his sight has been restored and he can wear aphakic glasses – glasses that work to replace the eye’s natural lens. He can behave like a normal child!

One sunny Sunday morning three months after Tsultrim’s surgery, I was strolling in the Naga Park behind the Potala Palace and unexpectedly met Tsultrim and his aunt. Tsultrim was running energetically around the pathways. His aunt was thrilled to tell me that Tsultrim had been admitted to kindergarten in the fall. Tsultrim never stopped running around during our whole conversation.

Tsultrim Dorje wearing his special aphakic glasses at school in Tibet

On Tuesday, I visited Tsultrim in his kindergarten. It was almost lunch time. All the kids had just packed up their text books and cleared their desks to get ready for lunch. They would eat together and then nap together in a dorm. Tsultrim, however, was waiting for his aunt to pick him up and take him home for his lunch and nap. I felt sorry he couldn’t stay with his classmates but his aunt explained that tuition at kindergarten costs US $176 each year and is double if Tsultrim stays at school for his lunch and nap. This extra cost would be a huge burden to the family because of their meager income. Nevertheless, being able to go to school and get an education – just like all the other children – counts more than anything else to Tsultrim and his family!

In February, I wrote about a little girl in Madagascar with such severe and unusual myopia (nearsightedness) that there was no help available to her in her own country.

This morning we received these photos of 8-year-old Andoniaina (Ando for short) wearing her new glasses specially made for her in Canada.

Ando wearing her new glasses

Ando lives on a small island in the Mozambique Channel, off the southwest coast of Madagascar. To seek help, she and her father travelled one hour by speedboat to Tulear on the mainland, then drove 1,000 kilometres to the capital of Antananarivo to get her eyes examined. They were eventually referred to a hospital in Antsirabe, 170 km south of the capital for a second opinion. That’s where Dr. Henry Nkumbe, Seva’s partner in Madagascar, saw the little girl and asked Seva Canada for help.

Seva then called on longterm supporter and optometrist, Dr. Larry Louie, for his expertise. Together Dr. Louie and his colleague Wayne Trieu of I-Lab Optical in Edmonton created a very special pair of glasses. The glasses were then hand-delivered to Madagascar in time for Christmas by a representative of Sherritt International Corporation, a Canadian resources company.

“Something like this is not usually done and isn’t readily available. That’s what made it challenging,” said Dr. Louie. The typical eyeglass prescription is 2.00 to -3.00 points, but Ando has a prescription of -27.00 points for her right eye and -23.50 points for her left eye. This means that, without glasses, Ando can’t see much beyond the tip of her nose. Ando was essentially blind and would not have been able to see the faces of her family.

Andoniaina and her family

To keep the glasses from becoming too thick and thus brushing against her eyelashes, Dr. Louie and optician Wayne Trieu used special myodisc lenses with two bi-concave lenses on the front and back of each lens. Another challenge was getting a frame that was strong and durable and that would last a long time.

Andoniaina’s story and the way in which Canadians in three provinces came together to help her was featured in the Edmonton Journal and on Global news.

Andoniaina at school with her new glasses

On behalf of Andoniaina, her family and our partner in Madagascar, Seva Canada would like to thank everyone who helped change this young girl’s life by giving her the gift of sight.

Andoniainia in her classroom off the coast of Madagascar

Here at Seva we call the acts of generosity and kindness that all our donors and partners in the field display, on a daily basis, compassion in action. Vancouver Talmud Torah’s Grade 7 class call those same acts a mitzvah.

A new program at Talmud Torah, called The Mitzvah of Valuing Philanthropy, has students researching charitable organizations that provide a wide range of services – locally and internationally. The students give a presentation on their chosen charity to the class and then the students together decide how to allocate grants to the different charities. This year, $18,000 was raised by students from their bar/bat mitzvah gifts, by the students’ families and community donors.

Seva Canada was very grateful to be included as one of the 20 charities in the program this year by students Shakaed Greif, Lena Arbetova and Adi Pick. The girls visited the Seva office, combed through our website and presented Seva’s cause to their class. They were obviously compelling as Seva received a cheque for $850 at yesterday’s Ceremony of Giving.

We are so grateful to Vancouver Talmud Torah and to Shakaed, Lena and Adi for their compassion, service and mitzvah. We promise to use the funds wisely and well and will dedicate them to restoring sight to children.

Children receiving eye care at a recent Seva eye camp in a remote hill district in Nepal. Photo courtesy of Johannes Burge

Today I’m heading out to Vancouver airport to visit our great friends at Worldwide Animal Travel who, together with KLM Cargo, very kindly ship children’s glasses to Africa for Seva. Three boxes containing 1,066 of lovely children’s eyeglass frames were donated to Seva Canada by OGI Canada Inc. and soon they’ll be winging their way to Kilimanjaro. Big thanks to Dick Murao at KLM Cargo for his compassion.

I think this is the fourth shipment of children’s frames I’ve sent in the last 2 years. Although adult glasses are easily procured in eastern Africa, children’s frames, especially the infant ones with hooks for behind the ears, are as precious as gold dust. Seva Canada and our partner in Africa, the Kilimanjaro Centre for Community Ophthalmology, is extremely grateful to OGI Canada Inc. for this very generous donation. Thanks Guy, Jamie and Sue for all your kindness!

The number one intervention for children with low vision is refraction and the prescription of the appropriate glasses. When I was in Tanzania in September 2008 attending a workshop on childhood cataract, I heard many sad and frustrating stories about the lack of kids’ glasses. A young girl was washing in the river and her glasses fell off and were lost. By the time she was seen by an eye specialist two years later and given a new pair of glasses, she had lost much of her vision, never to be recovered.

One ophthalmologist from Gondar in Ethiopia told me, “There are so many children with uncorrected refractive error. I work 700 miles from the capital, Addis Ababa, and even if parents can afford them and want to buy children’s glasses, it is impossible to get them. They may not even find children’s frames in the capital.”

Without glasses, children cannot reach their potential and many risk blindness from ambylopia. Providing children with the glasses they need is an urgent issue. Thank you OGI!

1. Rubbing eyes, blinking excessively
2. Squinting or covering one eye
3. Holding a book close to the face
4. Losing his or her place while reading
5. Headaches, nausea and dizziness
6. Excessive clumsiness
7. Tilting the head to one side
8. Frequently day dreaming
9. Using a finger to read
10. Performing below potential

Although newborns are able to see, vision improves and develops over time as the use of the eyes increases. For proper vision to develop, it is vital that there is a sharp image on the retina. It is very important that children receive proper eye care and that any problems are addressed quickly. All of Seva Canada’s programs place emphasis on reaching children, even in remote areas, and ensuring that they get care. Click here to join us and save a child from a lifetime of blindness.

Thank you to Granville EYELAND for these 10 tips.

12-year-old Estefany was bullied because she had two eye conditions – strabismus (squint) and ptosis (drooping of the eyelid).

She lives in a two-room wooden house in San Jose Pinula, Guatemala with her three brothers, father and stepmother.

Her father, a farmer, makes less than $8 a day and her stepmother, a maid, who makes even less. They were unable to afford treatment for Estefany at one of the clinics they approached.

Then they found Visualiza, Seva’s partner in Guatemala, in December 2008. Estefany had first surgery in February 2009 for strabismus and the next week she had surgery for the ptosis. The surgeries have helped Estefany greatly and she has not had to deal with the pain of being called “ugly”. She does much better with her school work and has great visual acuity. Her beautiful smile speaks volumes.

Before surgery

Estefany after eye surgery

To learn more about Seva’s work in Guatemala and how you can help, visit http://www.seva.ca/sevainguatemala.htm