The Story of Vanisha Dayal
Vanisha was born on September 20, 1989 with a massive life-threatening tumour, Melanoma, on left side of her face, leaving her blind in one eye. Dr's at BC Children's Hospital had never seen or heard of such case as Vanisha. After numerous attempts of chemotherapy, and radiation, the tumour was still growing aggressively taking over the right side of her face. She was given only two months to live.
Devastated as we were, with hope and courage Vanisha was taken to Toronto, Ontario to seek medical advice, and was blessed to meet Dr. Posnick, who gave us 50/50 hope in saving our daughter. Vanisha underwent a rigorous 19 hour operation at the age of only 4 months. The operation resulted in removing her left jaw, left eye, and soft tissue, as the cancer had spread vigorously. After a successful resection of the tumour, Vanisha was left disfigured. Nevertheless, we were happy that Vanisha had a second life.
As time went by, Vanisha was having difficulty with her speech, breathing, eating, and to smile, due to limited mobility of the mouth. We took her to Toronto every 6 months, where she underwent more surgeries to help her with day to day life. It was painstaking process for the whole family. Nevertheless, with courage, and hope we survived each surgery. Unfortunately, secondary to chemo, Vanisha was diagnosed with cardiomyopathy (enlarge /weak heart). Therefore, Dr. recommended that future surgeries be on hold till she is older, and little stronger.
Vanisha's situation was getting worse, with limited mobility of her mouth opening; she barely could get a spoon in her mouth. Each day was a threat of her choking on her food, and we wouldn't be able to save her with her limited mouth opening. She was not able to eat like a normal child, all her food needed to be pureed. Eating out or with friends was embarrassing for her as she was not able to eat her hot dog, burgers, or meat like other children, she had to cut it to bite size. This not only affected her physically, but psychologically. Vanisha needed reconstructive surgery immediately.
Unfortunately, we learnt that Dr. Posnick had moved to Washington, DC, and after consulting with Vanisha's physician, it was recommended that she seek her medical treatment with Dr. Posnick, since Vanisha's case was unique. We were in stress as we discovered the cost of Vanisha's reconstruction surgery of $100,000 plus in US. This was impossible for us to meet. In distress we were, for our daughters life was at stake. Word spread from family and friends to the community. A group of caring individuals came forth and made it their mission to ensure Vanisha gets her surgery needed in US. They organized many fundraising events, like Golf Tournament, Dinner & Dance, Hot dog sales, car washes, and so on. They strived, and mission was accomplished with support from many other organizations, community, and public at large. The Vanisha Foundation gave us moral and financial support for her reconstructive surgery. Vanisha on July 16, 1999 at the age of 9 went thru an extensive surgery of 15 hours in Washington. This surgery was to build her lower left jaw and cheekbone, which was only possible by removing a fibula bone from her leg. This procedure gives Vanisha an improved symmetric lower jaw, and she is able to breathe, and eat comfortably. With everyone's prayers and support, surgery was a success.
Vanisha just turned 21 on Sept 20, 2010. She is living a comfortable life, and with a smile, because of The Vanisha Foundation. This was only possible because of the Foundation.
Let us support The Vanisha Foundation, so they can make a difference in another child's life.
Jaishree and Gulab Dayal
The Story of Stefan Grupp
When Erin (Stefan's mother) was still under 6 months pregnant with Stefan she had a third mandatory ultrasound where it was discovered that he was missing the Septum Pellucidum in his brain. (This is the band which sends messages across from one side of the brain to the other.) Immediately we were sent to Medical Genetics, and painted quite a grave picture of Stefan's future.
The family believes that Stefan's extremely early birth was a result of a mandatory Emergency Amniocentesis. The doctors wanted to further investigate Stefan's chromosomes. As a result Erin went into labour late that night, and by some miracle was able to keep him inside for another 10 days. Our son was born at 23 weeks and 5 days. He was 1 lb. 5 oz. He was considered a Micro-Preemie. Stefan was ventilated for 3 months and spent 5 1/2 months in the hospital before coming home. Stefan's numerous challenges have included: severe infections, brain bleeds, a massive potassium overdose (due to human error while hospitalized), and heart surgery. He ended up with a Chronic Lung Disease called Bronchial Pulmonary Dysplasia which has caused him to have an extremely compromised immune system. He gets sick very easily. A cold to you and me is Pneumonia to him. He has never weighed more than 27 lbs and wears size 18 - 24 month pants......at age 6!
As a result of his early birth, Stefan has severe Cerebral Palsy, is bi-laterally deaf, and non-verbal. He is fed through a tube attached to his stomach. He cannot take anything by mouth, (food, liquids or medicines), as it creates excess saliva which requires suctioning. He has mixed Cerebral Palsy being spastic in his arms and dystonic in his legs. This means that his movements are very difficult and painful. He is very strong and constantly arches backwards. This makes for difficult movement for him and lifting for us. He cannot sit, crawl, stand or walk. Stefan's contracted muscle tone requires him to be strapped fully into his wheelchair. We are hoping to get a Kid Walk walker for him one day. He would dearly love to crawl too and maybe somehow there is a lift of sorts to help him with that.
Stefan needs 24 hour constant care. Presently the family receives a small amount of financial support a month in respite funding. There respite fund covers one respite worker, 4 times a month, one day a week of help and one house cleaning a month.
Despite all of his enormous challenges Stefan has an open and joyful spirit. His lighthearted humor, easy delight, and deep curiosity about people and events around him allow this little person to somehow light up a room and touch anyone who comes into contact with him.
We greatly appreciate any help to give Stefan a better quality of life as he has even more challenges ahead.
Erin and Holger Grupp
- In 2010, donated $2,400 to Stefan Grupp for respite care.
- In 2008, donated $15,000 to B.C. Children's Hospital's Cleft Palate Craniofacial Division towards various programs and equipment needs.
- In 2005, donated $10,000 to B.C. Children's Hospital's Cleft Palate Craniofacial Division towards various programs and equipment needs.
- In 2004, donated $10,000 to B.C. Children's Hospital's Cleft Palate Craniofacial Division towards various programs and equipment needs.
- In 2004, The Vanisha Foundation donated $10,000 to B.C. Children's Hospital's Cleft Palate Craniofacial Division Program towards the purchase of a "3-D Digital Camera and Software". This equipment takes 3-D images of a child's face, which is used for surgical and orthodontic planning prior to the child having surgery.
- In 2003, The Vanisha Foundation donated to B.C. Children's Hospital's Cleft Palate Craniofacial Division, a specialized speech diagnostic equipment called the "Nasometer" valued at $6,000.
- In 2000, The Vanisha Foundation formed a partnership with B.C. Children's Hospital's Cleft Palate Craniofacial Division to identify the needs of Cleft Palate Craniofacial patients and strategize avenues to raise funds on an ongoing basis to support the Division's programs and equipment needs.
- What is a Craniofacial Condition and what does that mean for the child and family?
Children can be born with a craniofacial condition (sometimes called a birth defect) or they can acquire them through an accident, like a burn or a motor vehicle accident or through illnesses like cancer. No matter how the child is affected, the issues they face are complicated and the treatment plan takes place over most of the childhood, adolescent and early adult years. The most obvious issue for the children is the facial appearance, but in addition to having a facial difference, many of the conditions also affect the child’s ability to speak, hear, see and eat. Some children face many learning challenges and concerns with self-esteem and self-confidence as well.
- How many children in BC are affected?
Currently in BC, there are approximately 1,500 patients with a clefting condition and that means about 90 new babies are born each year with some type of cleft. In addition, there are approximately 270 patients living with a Craniofacial Condition and about 15 new babies are born each year with one of these very rare conditions.
- Who is the team that looks after the children and their families?
To ensure that the "whole" child is looked after and helped to become a successful adult, B.C. Children's Hospital has a team of professionals. This includes plastic/reconstructive surgeons, oral-maxillo-facial surgeon, ear-nose-throat surgeons, pediatricians, speech-language pathologists, an audiologist, social worker and nurse clinician. All the doctors, nurses and other health professionals have additional special education in the field of craniofacial care.
- How long does the treatment take?
Surgical treatment to begin to repair the physical defect may occur as early as in the first weeks of life. The treatment plan unfolds through the child's early years, teen-age years and is often not complete until early adulthood.