Angels4Zoey Care
Donation protected
http://www.theamazingracecanada.ctv.ca/teams/anthonyandbrandon
“It takes a village to raise our child!”
After consulting services that help families plan for the future of a loved one with multiple disabilities we learned that we need to expect it to cost about $500,000 to give Zoey the care and support she will need to live independantly as an adult.
Please take the time to read more about her and why we are raising this money.
We are so very grateful to everyone that chooses to read our story and considers being a part of our village!
Our Story
Zoey Smith arrived in this world a bit different than most. Because of Zoey's multiple, very complex medical issues it was agreed that she would be raised by her grandparents Liz and Gord. “Unique” is the word that is used most by doctors to describe Zoey; they have not seen anyone like her. So we learn on the go, together.
The photo below is Zoey with Aunt Kayla.
Today Zoey is a happy 6 year old girl that loves everyone. She is very small for her age weighing 15.6kg (33 lbs) and is 87cm (34 inches) tall. Zoey has a global developmental delay which means she is functioning at 3 year of age. Due to this delay Zoey is unable to make her mouth form the words she is thinking.
She can only speak 2 words "Hi" and Hello" but continues to learn sign language. She is also learning a Vantage Lite communication device which is a special computer that uses picture cues to identify words. This device has given Zoey a voice. She is fed all food through a g-tube into her stomach. She uses a wheelchair for mobility and protection at school and in public, at home she is able to crawl.
Zoey developed an unknown cause of brittle bones at 2.5 years old. This caused her bones to become soft resulting in 12 breaks in her arms and legs. Her legs are now moderately bowed in the tibias and severely bowed in the femurs. She is considered at extreme risk of breaking if she stands. Normal legs carry a person’s body weight through the entire leg, she carries it at the point of the bow in the femur and the tibia the 2 weakest points of each leg. The doctors can operate to correct the damage done to her legs when her bones become strong in the future. Until then she wears braces on her lower legs to protect her from bumps and remains in a wheelchair, which offers her protection and mobility. The doctors are continually looking for different treatment plans.
We are raising money to provide for Zoey’s lifelong care. When Zoey turns 18 years old she will no longer qualify for the funding she currently receives as a child which cover 75% of her needs. Zoey requires 24 hour care and when she is 17.5 years old we can apply for the adult program. Once considered an adult in Ontario, Canada there is much less funding and the waitlist for any available funding is currently 20 years for 24 hour support. Let me put this in perspective –
That is “ONE GENERATION” wait time.
The government restricts income to $6,000 per year over the Ontario Disability Support Payments (ODSP). The maximum a person can receive from ODSP per month is $1,100. If you are disabled you are expected to remain in poverty. At this time you have no right to inherit the family home or savings your parents put aside for you without it at least reducing what little you receive from the government disability program. Receiving too much money can get you removed from the benefit program completely.
WE DO NOT ACCEPT that our granddaughter must live in poverty because her body and her mental abilities do not fit society's "norm"!
WE DO NOT ACCEPT that our granddaughter must wait 20 years to have the help she will need to have a good life and enjoy full citizenship!
So we ask What Else is Possible?
How does it get better than this?
It is our fear that we have tapped out the goodwill "support" of our local contacts and now we reach further, to corporate donations and those we have not yet met.
The goal is to create 2 additional sources of income for Zoey that would enhance the disability income paid by the government.
The first, is a program offered by the government called the Registered Disability Savings Plan (RDSP). We can add $1,500 each year up to her 49th birthday and the government will add another $3,500 each year. Any funds withdrawn from this program do not affect her income level tracked by ODSP. The main limitation of this program is that funds can only be withdrawn after they have been in the RDSP for 10 years.
The second is set up a Henson Trust fund that will provide for her housing and personal needs. This trust can purchase "approved" disability related items as well as give her the allowed extra annual income of $6,000. This can be managed by a “Micro-Board” of volunteers that will watch over her care and finances.
We, Gord and Liz are grandparents with few savings and now raising our grandchild. We do not have 25 or 30 years to set up a fund for her future care and with minimal government funding when she turns 18 our income must support her, therefore retirement is not an option. The current plan to provide for her is using our term life insurance, but in order for her to receive the money we have to die before we are 80 which is not a guarantee. A year ago I lost my job and Gord was diagnosed with cancer a month later. It has been a year filled with challenges, growth and blessings for our family. Raising Zoey has certainly been different than raising our healthy children but we would do it all again in a heartbeat!
It has taken Gord and I, 4 years to be able to ask for the help we need. It was not easy to say we could not do this alone. The reality is we can’t, we have to ask what else is possible.
We have been active in raising funds for what we have needed to this point.
As of June 1st, 2016 we completed our biggest fundraising project to purchase a van to be converted for wheelchair access. We received funding from President’s Choice Children’s Charity, March of Dimes and Easter Seals. Without them it would not have been possible! With the help of family, friends and many other people we did a 6 month blitz of various activities and raised the $17,000 we needed to cover the remaining balance. The van is scheduled to begin conversion in June and we should have it by the end of July 2016!
The photo below is Grandma Liz and Zoey with the new van!
When she arrived.
Zoey was born 6 weeks premature because the umbilical cord was deteriorating. Zoey was born with a hole in her heart, a small ventricle, a soft trachea, lungs that were not fully formed and having a rare duplication of the 1st chromosome. She spent her first 7 weeks in the hospital. We had her home for the next 6 weeks; this was a very stressful time because her heart was in such bad shape we were told not to let her cry, cough or be upset in anyway or she may have a heart attack. As you can imagine that was not easy to do, we were walking on eggshells. She was fed by a nasal tube into her stomach at this point because liquids being swallowed were choking her and getting into her lungs. She quickly learned to spit out her own saliva rather than try to swallow it which caused her to choke most of the time. She was on 8 different medications a day. She was fed 8 times a day because she could only handle small amounts of food at a time or she would vomit which created a high risk of choking with the soft trachea. One of the problems of having the feeding tubes is her body created a lot of mucous which she would vomit at least 4 times a day. We had a suction machine at home to help clear her airway each time. As her family we were in a crash course on how to help her survive. It was extremely stressful.
The photo below is Zoey at birth. 3lbs 8oz.
Zoey stopped growing at 3.5 months and was showing signs her heart was in trouble. Zoey underwent surgery at the Children’s Hospital to insert a g-tube. She ended up on a ventilator for 4 days and had to have her heart assisted over 12 times. She was considered extremely critical. She had a lung infection going into surgery that was not discovered with the usual pre-opt testing. On day 4 her body created a huge amount of mucous in her throat and lungs, her condition was becoming worse quickly. It was decided that it was her body’s attempt at removing the ventilator so the doctors decided to try removing it and see if she was able to breathe on her own. It worked!
The feeding tube allowed food to go directly into her stomach making it possible to remove the nasal feeding tube. Nasal feeding was causing an issue because it went into her stomach, keeping the valve at the top of her stomach open allowing for bad acid reflux and regular vomiting. This tube was also preventing her from crying, instead she coughed harshly. Finally at 4 months old we heard her cry. For the first time we could tell when she was upset or just had a cough. Zoey was transferred 10 days after surgery to Toronto Sick Kids Hospital where she would have the heart surgery to repair the hole between the ventricles, enlarge the small ventricle and repair a valve.
We then spent 5 weeks (our thanks to Ronald McDonald House for accommodations) fighting infections before it was decided that she was ready for heart surgery. Again she ended up on a ventilator, now for 10 days, again she had hidden infections and again at day 9 her body began to produce huge amounts of mucous. Because of the similarity to her first surgery it was agreed to attempt to take her off the ventilator. It worked! She was home a week later.
For the next year and a half Zoey was going to weekly physiotherapy and occupational therapy. Zoey did not have any automatic responses in her body to tell her how to sit up or crawl. She was taught each step and then suddenly her mind would put it all together and she could do it. It took 5 weeks to teach her how to sit up from a laying position.
At 2 years she was pulling herself to a stand with assistance and loved standing. She giggled each time she stood up! Although still excited about standing over several months she slowly stopped using her arms and legs to lift and support herself. The doctors decided it was just her lack of interest, we were told there was no need to worry.
At age 2.5years Zoey's bones suddenly started breaking. Both her legs broke just by changing her clothes. In just 6 weeks she broke 10 bones. She had both legs and one arm in a cast at the same time. The other arm would have been cast as well but the doctor missed the break in her collar bone and upper arm. Luckily these breaks were not very painful. We only knew there was a problem if she cried for more than 5 minutes or she tried to prevent you from touching her.
The doctors could not tell why she suddenly had very low levels of calcium, vitamin D and phosphates. The best guess at this point is it was a temporary case of Rickets. Rickets is malnutrition but she is on a high grade formula which should be providing what she needs.
We began to teach Zoey sign language because she was still non-verbal. She learned the sign for book in 1 day and has always loved reading. Today Zoey also uses a communication device, she has learned to speak a few words and has mastered the word "Hi". She can say it at will. She loves to say hi to people in stores and on the phone. She has about 6 more words she is working on but can't say them at will yet.
In July 2014 Zoey had a break in her femur. This was a very painful and traumatizing event for her. She was in a spika cast for 6 weeks. We were told the femer is the most pain bone to break in the body. It took Zoey a full year to recover from the emotional trauma of this break. She was not able to understand what happened.
The photo below is just before she woke up from surgery. The hole in the cast is to allow her feeding tube to connect to the g-tube. The bar between the legs is to help us pick her up. One hand behind her shoulders the other grabbing the bar.
It was a long summer with a body cast! That summer we had a 2 week heat wave of over 38 Celsius. We used a blow dryer on cool twice a day to dry the padding inside the cast she was so hot. We also put ice packs behind her, she appreciated that. We were able to get her knocked out with gas to remove the cast. She woke up in a near sitting position in a bed and suddenly realized she did not have the cast on!
You have never seen a happier kid! She proudly showed us and any nurse walking by how her legs moved. She had multiple pressure sores that became infected once the cast was removed but cleared up over the first 2 weeks. Her leg was not fully healed for another 2 weeks, and then she was able to begin physio again to strengthen her muscles.
We took Zoey to Shriner's hospital in Montreal in Feb 2015 for a second opinion. They specialize in brittle bones in children and do the latest research. They suggested an infusion of a drug they have been using for over 20 years with children who have the known forms of brittle bones. They suggested we try it with her because she has too much damage in her bones, she was at hight risk for more breaks. We had the first infusion in May 2015. Zoey's veins are very small and have been very damaged from all the blood work and I.V.'s she has had in her life. Blood tests became a traumatic event for all of us. The second infusion in Nov 2015 was canceled because they could not access any veins.
In January 2016 Zoey had a port inserted in her chest which now easily allows all blood tests and infusions. The second infusion was done the day after the port was inserted. Blood tests are now not as traumatic. We have to go monthly to the hospital to have the port line flushed but Zoey is getting more relaxed each time. The photo below is how we start each flush with Zoey cleaning and poking the port of the doll Polly.
In March 2016 we went for a return trip to Shriners Hospital in Montreal, Quebec. The doctors believe she is almost ready for her first surgery. We are currently going through some testing to confirm if this is the correct time for surgery. Zoey will need an operation on each leg in the thigh and tibia to correct the bowing and insert a rod in the center of the bone for support. The first surgery will be the thighs because they are the most damaged.
“It takes a village to raise our child!”
After consulting services that help families plan for the future of a loved one with multiple disabilities we learned that we need to expect it to cost about $500,000 to give Zoey the care and support she will need to live independantly as an adult.
Please take the time to read more about her and why we are raising this money.
We are so very grateful to everyone that chooses to read our story and considers being a part of our village!
Our Story
Zoey Smith arrived in this world a bit different than most. Because of Zoey's multiple, very complex medical issues it was agreed that she would be raised by her grandparents Liz and Gord. “Unique” is the word that is used most by doctors to describe Zoey; they have not seen anyone like her. So we learn on the go, together.
The photo below is Zoey with Aunt Kayla.
Today Zoey is a happy 6 year old girl that loves everyone. She is very small for her age weighing 15.6kg (33 lbs) and is 87cm (34 inches) tall. Zoey has a global developmental delay which means she is functioning at 3 year of age. Due to this delay Zoey is unable to make her mouth form the words she is thinking.
She can only speak 2 words "Hi" and Hello" but continues to learn sign language. She is also learning a Vantage Lite communication device which is a special computer that uses picture cues to identify words. This device has given Zoey a voice. She is fed all food through a g-tube into her stomach. She uses a wheelchair for mobility and protection at school and in public, at home she is able to crawl.
Zoey developed an unknown cause of brittle bones at 2.5 years old. This caused her bones to become soft resulting in 12 breaks in her arms and legs. Her legs are now moderately bowed in the tibias and severely bowed in the femurs. She is considered at extreme risk of breaking if she stands. Normal legs carry a person’s body weight through the entire leg, she carries it at the point of the bow in the femur and the tibia the 2 weakest points of each leg. The doctors can operate to correct the damage done to her legs when her bones become strong in the future. Until then she wears braces on her lower legs to protect her from bumps and remains in a wheelchair, which offers her protection and mobility. The doctors are continually looking for different treatment plans.
We are raising money to provide for Zoey’s lifelong care. When Zoey turns 18 years old she will no longer qualify for the funding she currently receives as a child which cover 75% of her needs. Zoey requires 24 hour care and when she is 17.5 years old we can apply for the adult program. Once considered an adult in Ontario, Canada there is much less funding and the waitlist for any available funding is currently 20 years for 24 hour support. Let me put this in perspective –
That is “ONE GENERATION” wait time.
The government restricts income to $6,000 per year over the Ontario Disability Support Payments (ODSP). The maximum a person can receive from ODSP per month is $1,100. If you are disabled you are expected to remain in poverty. At this time you have no right to inherit the family home or savings your parents put aside for you without it at least reducing what little you receive from the government disability program. Receiving too much money can get you removed from the benefit program completely.
WE DO NOT ACCEPT that our granddaughter must live in poverty because her body and her mental abilities do not fit society's "norm"!
WE DO NOT ACCEPT that our granddaughter must wait 20 years to have the help she will need to have a good life and enjoy full citizenship!
So we ask What Else is Possible?
How does it get better than this?
It is our fear that we have tapped out the goodwill "support" of our local contacts and now we reach further, to corporate donations and those we have not yet met.
The goal is to create 2 additional sources of income for Zoey that would enhance the disability income paid by the government.
The first, is a program offered by the government called the Registered Disability Savings Plan (RDSP). We can add $1,500 each year up to her 49th birthday and the government will add another $3,500 each year. Any funds withdrawn from this program do not affect her income level tracked by ODSP. The main limitation of this program is that funds can only be withdrawn after they have been in the RDSP for 10 years.
The second is set up a Henson Trust fund that will provide for her housing and personal needs. This trust can purchase "approved" disability related items as well as give her the allowed extra annual income of $6,000. This can be managed by a “Micro-Board” of volunteers that will watch over her care and finances.
We, Gord and Liz are grandparents with few savings and now raising our grandchild. We do not have 25 or 30 years to set up a fund for her future care and with minimal government funding when she turns 18 our income must support her, therefore retirement is not an option. The current plan to provide for her is using our term life insurance, but in order for her to receive the money we have to die before we are 80 which is not a guarantee. A year ago I lost my job and Gord was diagnosed with cancer a month later. It has been a year filled with challenges, growth and blessings for our family. Raising Zoey has certainly been different than raising our healthy children but we would do it all again in a heartbeat!
It has taken Gord and I, 4 years to be able to ask for the help we need. It was not easy to say we could not do this alone. The reality is we can’t, we have to ask what else is possible.
We have been active in raising funds for what we have needed to this point.
As of June 1st, 2016 we completed our biggest fundraising project to purchase a van to be converted for wheelchair access. We received funding from President’s Choice Children’s Charity, March of Dimes and Easter Seals. Without them it would not have been possible! With the help of family, friends and many other people we did a 6 month blitz of various activities and raised the $17,000 we needed to cover the remaining balance. The van is scheduled to begin conversion in June and we should have it by the end of July 2016!
The photo below is Grandma Liz and Zoey with the new van!
When she arrived.
Zoey was born 6 weeks premature because the umbilical cord was deteriorating. Zoey was born with a hole in her heart, a small ventricle, a soft trachea, lungs that were not fully formed and having a rare duplication of the 1st chromosome. She spent her first 7 weeks in the hospital. We had her home for the next 6 weeks; this was a very stressful time because her heart was in such bad shape we were told not to let her cry, cough or be upset in anyway or she may have a heart attack. As you can imagine that was not easy to do, we were walking on eggshells. She was fed by a nasal tube into her stomach at this point because liquids being swallowed were choking her and getting into her lungs. She quickly learned to spit out her own saliva rather than try to swallow it which caused her to choke most of the time. She was on 8 different medications a day. She was fed 8 times a day because she could only handle small amounts of food at a time or she would vomit which created a high risk of choking with the soft trachea. One of the problems of having the feeding tubes is her body created a lot of mucous which she would vomit at least 4 times a day. We had a suction machine at home to help clear her airway each time. As her family we were in a crash course on how to help her survive. It was extremely stressful.
The photo below is Zoey at birth. 3lbs 8oz.
Zoey stopped growing at 3.5 months and was showing signs her heart was in trouble. Zoey underwent surgery at the Children’s Hospital to insert a g-tube. She ended up on a ventilator for 4 days and had to have her heart assisted over 12 times. She was considered extremely critical. She had a lung infection going into surgery that was not discovered with the usual pre-opt testing. On day 4 her body created a huge amount of mucous in her throat and lungs, her condition was becoming worse quickly. It was decided that it was her body’s attempt at removing the ventilator so the doctors decided to try removing it and see if she was able to breathe on her own. It worked!
The feeding tube allowed food to go directly into her stomach making it possible to remove the nasal feeding tube. Nasal feeding was causing an issue because it went into her stomach, keeping the valve at the top of her stomach open allowing for bad acid reflux and regular vomiting. This tube was also preventing her from crying, instead she coughed harshly. Finally at 4 months old we heard her cry. For the first time we could tell when she was upset or just had a cough. Zoey was transferred 10 days after surgery to Toronto Sick Kids Hospital where she would have the heart surgery to repair the hole between the ventricles, enlarge the small ventricle and repair a valve.
We then spent 5 weeks (our thanks to Ronald McDonald House for accommodations) fighting infections before it was decided that she was ready for heart surgery. Again she ended up on a ventilator, now for 10 days, again she had hidden infections and again at day 9 her body began to produce huge amounts of mucous. Because of the similarity to her first surgery it was agreed to attempt to take her off the ventilator. It worked! She was home a week later.
For the next year and a half Zoey was going to weekly physiotherapy and occupational therapy. Zoey did not have any automatic responses in her body to tell her how to sit up or crawl. She was taught each step and then suddenly her mind would put it all together and she could do it. It took 5 weeks to teach her how to sit up from a laying position.
At 2 years she was pulling herself to a stand with assistance and loved standing. She giggled each time she stood up! Although still excited about standing over several months she slowly stopped using her arms and legs to lift and support herself. The doctors decided it was just her lack of interest, we were told there was no need to worry.
At age 2.5years Zoey's bones suddenly started breaking. Both her legs broke just by changing her clothes. In just 6 weeks she broke 10 bones. She had both legs and one arm in a cast at the same time. The other arm would have been cast as well but the doctor missed the break in her collar bone and upper arm. Luckily these breaks were not very painful. We only knew there was a problem if she cried for more than 5 minutes or she tried to prevent you from touching her.
The doctors could not tell why she suddenly had very low levels of calcium, vitamin D and phosphates. The best guess at this point is it was a temporary case of Rickets. Rickets is malnutrition but she is on a high grade formula which should be providing what she needs.
We began to teach Zoey sign language because she was still non-verbal. She learned the sign for book in 1 day and has always loved reading. Today Zoey also uses a communication device, she has learned to speak a few words and has mastered the word "Hi". She can say it at will. She loves to say hi to people in stores and on the phone. She has about 6 more words she is working on but can't say them at will yet.
In July 2014 Zoey had a break in her femur. This was a very painful and traumatizing event for her. She was in a spika cast for 6 weeks. We were told the femer is the most pain bone to break in the body. It took Zoey a full year to recover from the emotional trauma of this break. She was not able to understand what happened.
The photo below is just before she woke up from surgery. The hole in the cast is to allow her feeding tube to connect to the g-tube. The bar between the legs is to help us pick her up. One hand behind her shoulders the other grabbing the bar.
It was a long summer with a body cast! That summer we had a 2 week heat wave of over 38 Celsius. We used a blow dryer on cool twice a day to dry the padding inside the cast she was so hot. We also put ice packs behind her, she appreciated that. We were able to get her knocked out with gas to remove the cast. She woke up in a near sitting position in a bed and suddenly realized she did not have the cast on!
You have never seen a happier kid! She proudly showed us and any nurse walking by how her legs moved. She had multiple pressure sores that became infected once the cast was removed but cleared up over the first 2 weeks. Her leg was not fully healed for another 2 weeks, and then she was able to begin physio again to strengthen her muscles.
We took Zoey to Shriner's hospital in Montreal in Feb 2015 for a second opinion. They specialize in brittle bones in children and do the latest research. They suggested an infusion of a drug they have been using for over 20 years with children who have the known forms of brittle bones. They suggested we try it with her because she has too much damage in her bones, she was at hight risk for more breaks. We had the first infusion in May 2015. Zoey's veins are very small and have been very damaged from all the blood work and I.V.'s she has had in her life. Blood tests became a traumatic event for all of us. The second infusion in Nov 2015 was canceled because they could not access any veins.
In January 2016 Zoey had a port inserted in her chest which now easily allows all blood tests and infusions. The second infusion was done the day after the port was inserted. Blood tests are now not as traumatic. We have to go monthly to the hospital to have the port line flushed but Zoey is getting more relaxed each time. The photo below is how we start each flush with Zoey cleaning and poking the port of the doll Polly.
In March 2016 we went for a return trip to Shriners Hospital in Montreal, Quebec. The doctors believe she is almost ready for her first surgery. We are currently going through some testing to confirm if this is the correct time for surgery. Zoey will need an operation on each leg in the thigh and tibia to correct the bowing and insert a rod in the center of the bone for support. The first surgery will be the thighs because they are the most damaged.
Organizer
Liz Smith
Organizer
Windsor, ON
