Mission Statement
The mission of Jordan Foundation USA is to be a unique nonprofit foundation committed to providing help for children and people who live in a wheelchair.
Jordan Foundation USA collaborates and networks with small and large business owners to promote awareness and implement real solutions that have a positive effect on the lives of others.
Jordan Foundation USA believes in the honest good will it serves, in the people that make our mission possible, in ourselves and our supporters and in the work we perform.
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| Narrative |
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Some more about Jordan Foundation USA
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In the beginning: “Sowing the seeds”…
Jordan Richard Buford was born into the world like many. We found ourselves blessed as we enjoyed the love a family shares when a new family member arrives. It was a time of celebration. It seemed the wife and I were so excited, glad and looking forward to establishing a family we didn’t waste any time getting right to business working to conceive yet another child, which would give us three.
Just before Jordan turned 1 year of age, we noticed our son, “Jordy” having trouble crawling, pulling himself up in his crib and other things babies start doing. So, to be on the safe side, we scheduled an appointment and general follow up at University of Michigan Hospital to further investigate what we thought was likely a minor delay of his development.
The doctor came in, then another, one by one, then team by team. We witnessed growing concerns and started to realize quickly this may be bigger than anything we might have expected. My wife and I held our son down on a table while doctors poked flimsy needles in his arms and legs. They were intensely looking at a computer screen, measuring and analyzing electrical activity and sensitivity from Jordan’s nerves to his muscle tissue and brain. Needless to say, it was not the most pleasant experience and was heightened when the doctors all left and then returned with somber faces and closed the door. They explained that our son had Spinal Muscular Atrophy (SMA) Jordan would never walk and his condition would progressively weaken. They explained that Jordan’s condition was genetic; there was a mutation of the SMN (Survival Motor Neuron) gene in both me and my wife. Both our genes passed to Jordan meaning his nerve cells do not properly function and do not carry the much needed proteins to bodily muscle tissues; so his muscle tissues would ‘atrophy,’ or waste overtime. Jordan would not be able to sit unsupported, brush his teeth, comb his hair, go the bathroom, wash or bath, eat at times without assistance, or manage daily aspects of life many of us take for granted. We accepted Jordan would not be able to do these things but would always struggle with and repress the fact that his condition would eventually lead to a cease of most any physical activity.
Within a few short hours, our world and life was changed forever.
All the doctors had to do now was perform a blood test (which, at the time, had only been technologically available within the past couple months) to confirm whether Jordan was SMA Type I or Type II. Type I meant sure death at an early age. Type II would mean a later onset where his muscle development would weaken over an undetermined and unfound “shortened lifespan.” Since the rate increase in muscle weakness varies this was impossible to measure. They further explained since my wife and I were carriers of them mutant gene, every time we conceive a child there was a 25% chance of effectively passing SMA to offspring. My wife, Kristen, was [sitting there] pregnant; in her 3rd trimester, with Karley, our third (and final) child. All we could do is pray and grieve. It seemed as though certain dreams were shattered. Somehow we held confidence through our faith, hope and grace would triumph.
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We left the hospital with tears streaming down our faces. Sickness filled our empty stomachs. We’ll never go back to that restaurant where we stopped and couldn’t eat. We were in a heavy depressive state for some time. I remember on one occasion after the news hit when me and Kristen were at the mall. We stopped and rested at the kids playing area, Jordan in the stroller with his sister, Taylor (4 years older). As we sat and watched the kids climbing, running and playing, we could help but think of our little Jordy-bug and how he would miss this kind of play and interaction with our kids. My wife and I looked at each other, again tears strolling down our faces. There was no need to say anything. The depression would be a nemesis our family would battle for life. As much as we focus on the many positive things we were so fortunate to have, there would always be a place of sadness in our hearts, and we would always battle these demons. We mentally prepared ourselves acknowledging that adversities would come; many days would be represent unfamiliar challenges and uncharted waters and may take a toll one more ways than we can imagine (as life would have it, work and social life were no exception).
We sought support and found Families of Spinal Muscular Atrophy (www.fsma.org), a nonprofit for families with SMA. In fact, we poured our hearts out in a letter asking for assistance and received a grant to travel to an annual conference which greatly helped us cope and deal with our plight. We found we were not alone; many families had similar situations, having children with SMA. The main difference was these children had a power wheelchair which provided mobility at a young age. While at the conference and attending the classes, lectures and counseling we took pictures of the children and their wheelchairs to bring back with us to Michigan. It was almost like Ripley’s, ‘Believe It or Not.’ We couldn’t believe that children this young could drive and maneuver these chairs! We knew immediately we had to get Jordy some wheels! Long story short, we lobbied for a chair through one of Michigan’s leading neurologist as well as a panel of medical (and insurance) professionals. Jordan, at 18 months old, was one of the youngest children in Michigan to ever receive an electric wheelchair.
We were told the number one cause of death for people with SMA was pneumonia since they had weaker lungs and a weaker immune system. Years that would follow would prove this to be an ongoing concern as Jordan battled many days and various times in Intensive Care Units undergoing sleepless nights and aggressive treatments followed by the need for critical prescriptions and medical equipment. At age 7, since Jordan underwent a spinal fusion surgery since his muscles could not support his spine and was suffering an acute case of scoliosis. The doctors performed a bone grafting, i.e. chiseled bone from Jordan’s pelvic and hip bone areas, applied those bone parts to his spine and permanently lined his spinal cord with a metal rod and other steel parts and wires. It was a heartbreaking experience. By the grace of God moving through these doctors, it is a miracle Jordan made it through the surgery. We are all very grateful.
More recent events brought about new struggles. The day came when it was nearly impossible to give Jordan a bath. We had to raise money to take out our bathtub and replace it with an open wheel-in shower. The project was made possible only through the kindness and generosity of people that truly cared to make a difference. We saw first hand how the charity of others could make a world of difference. Project like this help me come to realize that by tapping into this human kindness could make a difference by giving to others in need.
JF USA today…
Jordan is especially excited to see JF USA succeed. He wants to help by reaching out to other children and families that need help, i.e. help in any way possible. That is no surprise because our family raised the children with good values that advocate honesty, ethics, and goodwill. We have always told the children that there is one common human vocation - to be a good citizen and thoughtful human being. Jordan is 13 years old and doing well. He likes to travel; is going to Washington D.C. this year (2009) to visit the capital, monuments and museums. Jordan attends a regular public school and classes and is looking forward to high school and college. He enjoys computers, playing XBOX & PS3 video games with friends, Yu-Gi-Oh card games and tournaments, going to church, collecting $2 bills, going to the movies, meeting new people and participating in community events. One of Jordan’s favorite memories is going to Disney World. He realizes just how fortunate he is and accepts responsibility to advocate the gifts we have we are given to share.
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Not too long ago, Jordan lost a fine companion to cancer in 2008. Tulio (Italian for “lover”), was a great service dog. The experience of sharing life and losing his dog was very meaningful.
My thesis, as part of my MBA degree, was on the Americans with Disabilities Act of 1990. I truly believe it is one of the most notable pieces of legislature. But as former presidents and government officials have stated and implied on many occasions, there is a long way to go and the road to ensure nondiscrimination on the basis of disability remains difficult and steep. There remains a tremendous amount of hardship for people in wheelchairs; only some of which may be referred to herein. Fortunately, there are organizations striving for a place in our society to make a difference. It is our purpose, the purpose of JF USA, to use theses principals and experiences of our collective beings to make the world a better place to live.
The future: JF USA tomorrow…
The design and implementation of JF USA is rather simple and is based on a few basic areas of implementation:
1) Establish a multi-functional website serving as a focal point for outreach and helping others
2) Raise money through fundraising activities of and within our local communities, small and medium size business and organizations
3) Proceeds from the fundraising will serve two purposes
a) short term needs work to help children and people in wheelchairs (this could be as simple as offering to purchase a meal or groceries or fixing a wheelchair, getting new tire(s), transportation needs, reading material or material possessions that would lead to a better self esteem or open new opportunities for self-discovery, social positioning or other general needs that are deemed immediate, and
b) long term need of purchasing a mobile home that would be converted for transporting people in wheelchairs and a family member to events (e.g. say taking a group to a ball game or theatrical event near the holidays, etc.)
4) Implement networking website that allows people to interact, meet others and participate
Afterword
The experience and immense impact of living with a loved one bound to life in a wheelchair is at the core and the driving force that motivates the efforts to develop JF USA. It is difficult to speculate on certain aspects of what the future holds for JF USA. Certainly the driving forces and goodwill of US citizens are in place; ready to be managed honestly and wisely through JF USA. It is hopeful JF USA continues to grow in size and scope using transparent activities to meet the demands of those in need, like Jordan, who may share similar experiences or stories and to positively touch the lives of those that need grace and help.
Thank you,
God Bless Jordan Foundation USA
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Those acting on behalf of Jordan Foundation USA set a profound example of social responsibility and excellence in community leadership.
Richard Buford- Founder