Saturday, July 23, 2005
Hope for Hannah: Part Two
To see Hannah, it's difficult to understand how much her condition has improved. Her parents, Stan and Cindy had to really take Hannah's treatment and even her therapy into their own hands. The combination of the Williams syndrome and Batten's Disease had the doctors stumped. With the help of a sympathetic doctor, when others seemed resigned to the belief that she was beyond help, Stan and Cindy experimented and scientifically tested different treatments that included vitamins, supplements and essential oils.
Hannah's unique therapy co-developed by her mom and dad and synthesized by an MD has actually reversed some of Hannah's earlier maladies. Her hands and feet no longer turn blue, she is sleeping much more normally and her myocloic seizures have been reduced to a point to where they are no longer as painful and life-threatening.
Stan and Cindy believe that God has used Hannah's afflictions to demonstrate His faithfulness in Hannah's life so that Hannah life and story would be a testimony to the Lord. Hannah's neurologist after her recent hospital stay to install a feeding button in her stomach said that Hannah had improved to an earlier baseline that he saw when he saw her in the Fall.
Hannah's progress is significant but expensive. At the same time, Stan and Cindy are more determined than ever to continue with the special vitamin treatments and the cost of the metabolite that needs to be synthesized for Hannah. Hannah would have almost certainly died some time ago if it were not for God's help and her parents' therapeutic intervention.
The help and improvement have been significant and the family is in the process of working on a medical publication which will document the four-and-a-half years of pain staking care of an 'affected' Hannah and now over two years in theorizing, implementing and documenting the improvement in Hannah's condition which, they hope and God willing, will lead to the commencement of trials for use of the metabolite in other affected children, providing hope and relief for these kids and their families.
One of the latest developments is the interest by Joni Erickson Tada. Joni is the founder of Joni and Friends, an organization accelerating Christian ministry in the disability community. A diving accident in 1967 left Mrs. Tada a quadriplegic in a wheelchair, unable to use her hands. During two years of rehabilitation, she spent long months learning how to paint with a brush between her teeth. Her high detail fine art paintings and prints are sought after and collected.
Joni and Friends is a not-for-profit Christian organization dedicated to accelerating Christian ministry in the disability community. They advocate a biblical response toward disabilities, both visible and invisible; they provide opportunities for disability awareness; they educate the church community in practical ways of serving disabled persons; and they assist persons with disabilities in their progress toward independence and fulfillment.
Joni's ministry may be able to provide some of the funding necessary to continue the treatments and necessary symetabolite metabolite for Hannah. With some help in the funding, Stan and Cindy are encouraged to think that the Help for Hannah will end up becoming a help for many children and parents through the world.
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