IMAGINE… Eight miscarriage’s, the pain, the sadness, the ponder of guilt.
IMAGINE… Being told you would never have a child of your own to hold in your arms.
IMAGINE… Not giving up, moving forward, not losing hope, and having faith.
IMAGINE… Number 9 and Number 10 positive pregnancy test! Success!
IMAGINE…Your house not empty anymore, but filled with laughter from two Energetic boys.
IMAGINE… A third child on the ultrasound screen, It’s a Girl!
IMAGINE… At 34 weeks that little girl may not survive.
IMAGINE… The unknown.
IMAGINE… Her first cry was weak, but her eyes were gleaming with strength.
IMAGINE… Missing milestones, multiple test, endless doctor and therapy appointments.
IMAGINE… Shrugging shoulders, head shakes, frustration, pain, confusion, No Diagnosis.
IMAGINE… The word’s “It may be fatal”
IMAGINE.. A mother’s need for answer’s, two years of searching.
IMAGINE.. The feeling of knowing you have discovered the secret.
IMAGINE… The day the phone rings, your heart stops and the caller ID reveals “This is it”
IMAGINE… The word’s “You were right”
IMAGINE… Hearing that your child is only one of 51 cases in the world.
IMAGINE… The shock, “How could this be?”
IMAGINE… There is life saving treatment.
IMAGINE… Another Child, a girl, to be born nine months later.
IMAGINE… Knowing that little girl has a 25% chance of being case number 52.
IMAGINE… The treatment begins, you watch your two year old take her first steps, eat and drink independently, and she returns the hugs you have longed for.
IMAGINE… Nine months pass
IMAGINE… The newest girl is Born, beautiful and full of determination.
IMAGINE… Learning she too has this awful disease.
IMAGINE… Reliving the symptoms, the diagnosis, and the treatments.
IMAGINE… The Battles
IMAGINE… The sadness you feel when they hurt and you can’t take it away.
IMAGINE… You are determined to leave a legacy through your trials.
IMAGINE… Not sidelining. Dedicated to advocating, raising awareness, and not giving up until a cure is found.
IMAGINE… The strength you have discovered.
My husband and I ,and our children live everyday life to the fullest. We tried for 4 years to have children. We never gave up hope to have a family. We have four children. Trey 7, Heath 6, Olivia 4, and Madison 2. The journey we have experienced the last four years has been an experience to say the least. Olivia and Madison don’t only share the bond of sisterhood but also the bond of sharing a rare disease. There is only 52 cases in the world. They have a disease called Tyrosine Hydroxylase Deficiency Infantile Parkinsonism Variant. This causes an array of symptoms but their main symptom is Dystonia. Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. Dystonia affects their entire bodies including their lungs, and gastro systems. Everyday is a battle. Since diagnosed two years ago we have raised close to $60,000 for research, started a annual fundraiser walk, a support group. We advocate ever year in Washington, and have made it a mission to continue to raise awareness throughout the world until we can say we found a cure. Our Imagine story is filled with raw emotion I hope you enjoy it as much as I enjoyed writing it.