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A Treatment Is On the Way For Ireland
Ireland was diagnosed with a devastating genetic disorder. A treatment customized just for her is in development.
A Story of Hope and Answered Prayers
Diagnosis
Why We Need Help
Diagnosis
Ireland was diagnosed with a disease-causing variant on her CACNA1A gene. We were told she was the only known person in the world with this variant and no targeted treatments were available. This single letter change in her DNA has had catastrophic effects.
Treatment
Why We Need Help
Diagnosis
A nonprofit organization called N-Lorem accepted Ireland into their program. N-Lorem generously covers the research and development cost to create Ireland's customized treatment that targets her genetic variant. They create enough of the medicine to last Ireland for the rest of her life, for free.
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Why We Need Help
Why We Need Help
Why We Need Help
Ireland will need to be hospitalized every 1-3 months for treatment because the medicine goes in her spine. This is experimental medicine, so insurance does not cover hospital costs. Each year of treatment is projected to cost up to $250,000.
What is Ireland's Armor?
Ireland's Armor is made up of all of our family and friends who have prayed for and supported Ireland over the years!
"Put on all of God’s armor so that you will be able to stand firm against all strategies of the devil." -Ephesians 6:11
Ireland's CACNA1A Variant Has Devastating Effects
How A Genetic Based Therapy Can Help
The therapuetic created by N-Lorem is called an ASO (antisense oligonucleotide). It addresses the root cause of all of her symptoms and has the potential to slow the progression of her disease.