Elyzza Needs Angels to Mend Her "Broken Wings"
Donation protected
So, here goes everything LOL – I’ll try to keep it short! I am the grandmother (“Cici”) of Elyzza Claire Love, who will be 5 years old on April 19, 2019. Elyzza was born on April 19, 2014, in Memphis, Tennessee. Unbeknownst to me and my daughter, Katie (Elyzza’s mom), as we anxiously awaited “the big day,” Elyzza would turn out to be our “Angel With Broken Wings” (SEE reference to a book of the same title below.)
After a long labor at the hospital, I was elated to hold my second granddaughter for the first time! She was perfect to me, her mother, her big sister, and everyone who had waited anxiously to meet her! She was as pretty as a little doll with dark curly hair and huge dark eyes, and she was a VERY GOOD baby, who really never had anything apparently wrong with her, excluding an occasional sinus cold. Then, when she was about 5-6 months old, we began to notice that she kept her left hand clenched in a fist and would only use her right arm to reach for things or hold her pacifier, but were told by her pediatrician and other people, “Oh don’t worry! Children just develop at different rates.”
As fate would have it, right before her first birthday, Elyzza’s insurance carrier changed, which required her mother to find another pediatrician. When she took Elyzza to the new pediatrician for her 1-year checkup, after seeing that she could not crawl, could not pull up to a standing position, and that her left hand stayed in a fist, he referred her to a pediatric neurosurgeon. After having an MRI, the diagnosis was Schizencephaly, a very rare brain malformation which resulted from Elyzza having had a stroke in the womb at approximately 9 weeks gestation. Her form of Schizencephaly is bilateral (both sides of the brain) and she is “triplegic” (meaning that it affects both of her legs and one of her arms, wrists and hands). She is unable to use her left hand to except to hold things in the crook of her arm (a "helper hand"), she has an extremely weak immune system, her speech is greatly impaired and she has seizures. She walks on the ends/tips of her toes on her left side, and also has weakness and spasticity in her right leg (though not nearly as severe as her left leg). My little Angel has been receiving physical and occupational therapy since 15 months of age, has endured botox injections while she was awake with no anesthesia, underwent heel-cord lengthening & casting of the left leg, wears AFO braces, and a night splint for her left leg, all of which have been VERY temporary. She has a very weakened immune system and can act totally happy and fine one minute and spike a 105 fever the next, which causes her to have “febrile seizures.”
So we are back to square one, but now she also has scoliosis (curvature of her spine) from walking/limping on her left toes and her left foot is now deformed. Elyzza's last and only option for a better quality of life now is a life-changing surgery called Selective Dorsal Rhizotomy (SDR) which will be performed by neurosurgeon, Dr. Park, at St. Louis Children's Hospital in Missouri (5 hours away from where we live).
I realize that the damaged portions of her brain will never be replaced with new brain matter, but after almost 3.5 years of researching Dr. Park and SDR, my hope and prayer is that she following SDR Elyzza will grow up to be a functioning adult and independent. She still faces continuing occupational therapy for her hand and speech therapy (she is at the level of a 3 year old in speech), but after SDR she will only need 6 months of intense physical therapy and she will be able to walk flat-footed, run, climb a slide, ride a bike, TIE HER SHOES (something she desperately wants to do and which causes such sad emotional meltdowns at times), dress herself, ride a horse, swing on the "big girl" swings at the park instead of the baby swings, and hold her mother's face with BOTH hands when she tells her "I WUV YOU MUMMY."
In spite of all her limitations and hurdles, I know that God does NOT “make mistakes” and that Elyzza has a purpose in this world (besides bringing joy to me and her family), as do other children with Schizencephaly, Cerebral Palsy and other debilitating conditions. She has been my hero and my inspiration (I AM 53 YEARS OLD LOL!) since the day she was diagnosed with Schizencephaly because she is genuinely sweet, kind, affectionate, funny, appreciative, a HUGE animal lover, and, despite the fact that she is small, her determination and self-confidence are enormous! She gets frustrated when she can’t tie or buckle her shoes and sometimes it turns into an emotional meltdown, but it does not keep her ALWAYS trying again.
Because of Elyzza’s successes (she was accepted to public school in the Pre-K 4 year old class), her determination and her “I can do it” attitude, we submitted an application packet to Dr. Park’s office in late Fall 2018, and received an in-person consultation with Dr. Park in St. Louis, Missouri, just yesterday, January 28, 2019! At the conclusion of the consultation, after various strength tests, range of motion tests, etc., Dr. Park told us that Elyzza is a perfect candidate for SDR!!!!! Due to financial constraints and not being able to miss work without pay for several weeks at this time, her surgery will be scheduled for June 2019 (we will know the exact surgery date sometime in March).
HERE IS WHERE WE NEED YOUR HELP: A major, life-changing surgery like SDR comes at a large price. The overall estimated cost of the surgery plus braces for one year (after that, she won’t need them any longer!), pediatric wheelchair for a couple of weeks post-op, intense physical therapy 4-5 days per week for 6-8 months following surgery, a return visit to Dr. Park four months post-op, and the resulting time missed from work WITHOUT PAY, will be between $50,000-$60,000. Elyzza’s health insurance might possibly pay 70% of the surgery cost only and her deductible of $2,250.00 must be paid before health insurance will pay anything toward the surgery. Also, Dr. Park and St. Louis Children’s hospital is in Missouri and Elyzza lives in Tennessee, it is quite possible that health insurance will not pay anything. To care and provide for Elyzza’s medical, therapeutic and other needs necessitated by Schizencephaly over the last 3.5 years since she was diagnosed, her immediate family (me, her mother, her other grandparents, and even her great-grandmother) has exhausted every financial resource we have. No donation amount is too small – I know how hard times are for many people, I’ve always donated to causes that are close to my heart when I was able to do so, and, if you are not in a financial position to help heal Elyzza’s “broken wings,” please SHARE THIS CAMPAIGN to your own Facebook page or other social media for her! Most importantly, please keep her in your prayers!!!
NOTE: Any funds donated to Elyzza’s fundraiser campaign that exceed the costs necessary for her to have SDR in June and a 4-month follow-up post-surgery appointment with Dr. Park, I pledge to donate to the NEXT child in line for approved SDR (provided that said family is in need of donations as Elyzza is at this time.)
For more information on Schizencephaly, please visit:
www.wearerare.org (there is also a book written some Schiz Kid mothers called “Angels With Broken Wings” for sale on this site) and https://www.healthline.com/health/schizencephaly
For more information about life-altering SDR, please follow this link to learn how successful SDR is and has been for decades: https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy
And to join the St. Louis Children’s Hospital Selective Dorsal Rhizotomy Facebook page and see the “before” and “after” successes: https://www.facebook.com/groups/161839724125/
After a long labor at the hospital, I was elated to hold my second granddaughter for the first time! She was perfect to me, her mother, her big sister, and everyone who had waited anxiously to meet her! She was as pretty as a little doll with dark curly hair and huge dark eyes, and she was a VERY GOOD baby, who really never had anything apparently wrong with her, excluding an occasional sinus cold. Then, when she was about 5-6 months old, we began to notice that she kept her left hand clenched in a fist and would only use her right arm to reach for things or hold her pacifier, but were told by her pediatrician and other people, “Oh don’t worry! Children just develop at different rates.”
As fate would have it, right before her first birthday, Elyzza’s insurance carrier changed, which required her mother to find another pediatrician. When she took Elyzza to the new pediatrician for her 1-year checkup, after seeing that she could not crawl, could not pull up to a standing position, and that her left hand stayed in a fist, he referred her to a pediatric neurosurgeon. After having an MRI, the diagnosis was Schizencephaly, a very rare brain malformation which resulted from Elyzza having had a stroke in the womb at approximately 9 weeks gestation. Her form of Schizencephaly is bilateral (both sides of the brain) and she is “triplegic” (meaning that it affects both of her legs and one of her arms, wrists and hands). She is unable to use her left hand to except to hold things in the crook of her arm (a "helper hand"), she has an extremely weak immune system, her speech is greatly impaired and she has seizures. She walks on the ends/tips of her toes on her left side, and also has weakness and spasticity in her right leg (though not nearly as severe as her left leg). My little Angel has been receiving physical and occupational therapy since 15 months of age, has endured botox injections while she was awake with no anesthesia, underwent heel-cord lengthening & casting of the left leg, wears AFO braces, and a night splint for her left leg, all of which have been VERY temporary. She has a very weakened immune system and can act totally happy and fine one minute and spike a 105 fever the next, which causes her to have “febrile seizures.”
So we are back to square one, but now she also has scoliosis (curvature of her spine) from walking/limping on her left toes and her left foot is now deformed. Elyzza's last and only option for a better quality of life now is a life-changing surgery called Selective Dorsal Rhizotomy (SDR) which will be performed by neurosurgeon, Dr. Park, at St. Louis Children's Hospital in Missouri (5 hours away from where we live).
I realize that the damaged portions of her brain will never be replaced with new brain matter, but after almost 3.5 years of researching Dr. Park and SDR, my hope and prayer is that she following SDR Elyzza will grow up to be a functioning adult and independent. She still faces continuing occupational therapy for her hand and speech therapy (she is at the level of a 3 year old in speech), but after SDR she will only need 6 months of intense physical therapy and she will be able to walk flat-footed, run, climb a slide, ride a bike, TIE HER SHOES (something she desperately wants to do and which causes such sad emotional meltdowns at times), dress herself, ride a horse, swing on the "big girl" swings at the park instead of the baby swings, and hold her mother's face with BOTH hands when she tells her "I WUV YOU MUMMY."
In spite of all her limitations and hurdles, I know that God does NOT “make mistakes” and that Elyzza has a purpose in this world (besides bringing joy to me and her family), as do other children with Schizencephaly, Cerebral Palsy and other debilitating conditions. She has been my hero and my inspiration (I AM 53 YEARS OLD LOL!) since the day she was diagnosed with Schizencephaly because she is genuinely sweet, kind, affectionate, funny, appreciative, a HUGE animal lover, and, despite the fact that she is small, her determination and self-confidence are enormous! She gets frustrated when she can’t tie or buckle her shoes and sometimes it turns into an emotional meltdown, but it does not keep her ALWAYS trying again.
Because of Elyzza’s successes (she was accepted to public school in the Pre-K 4 year old class), her determination and her “I can do it” attitude, we submitted an application packet to Dr. Park’s office in late Fall 2018, and received an in-person consultation with Dr. Park in St. Louis, Missouri, just yesterday, January 28, 2019! At the conclusion of the consultation, after various strength tests, range of motion tests, etc., Dr. Park told us that Elyzza is a perfect candidate for SDR!!!!! Due to financial constraints and not being able to miss work without pay for several weeks at this time, her surgery will be scheduled for June 2019 (we will know the exact surgery date sometime in March).
HERE IS WHERE WE NEED YOUR HELP: A major, life-changing surgery like SDR comes at a large price. The overall estimated cost of the surgery plus braces for one year (after that, she won’t need them any longer!), pediatric wheelchair for a couple of weeks post-op, intense physical therapy 4-5 days per week for 6-8 months following surgery, a return visit to Dr. Park four months post-op, and the resulting time missed from work WITHOUT PAY, will be between $50,000-$60,000. Elyzza’s health insurance might possibly pay 70% of the surgery cost only and her deductible of $2,250.00 must be paid before health insurance will pay anything toward the surgery. Also, Dr. Park and St. Louis Children’s hospital is in Missouri and Elyzza lives in Tennessee, it is quite possible that health insurance will not pay anything. To care and provide for Elyzza’s medical, therapeutic and other needs necessitated by Schizencephaly over the last 3.5 years since she was diagnosed, her immediate family (me, her mother, her other grandparents, and even her great-grandmother) has exhausted every financial resource we have. No donation amount is too small – I know how hard times are for many people, I’ve always donated to causes that are close to my heart when I was able to do so, and, if you are not in a financial position to help heal Elyzza’s “broken wings,” please SHARE THIS CAMPAIGN to your own Facebook page or other social media for her! Most importantly, please keep her in your prayers!!!
NOTE: Any funds donated to Elyzza’s fundraiser campaign that exceed the costs necessary for her to have SDR in June and a 4-month follow-up post-surgery appointment with Dr. Park, I pledge to donate to the NEXT child in line for approved SDR (provided that said family is in need of donations as Elyzza is at this time.)
For more information on Schizencephaly, please visit:
www.wearerare.org (there is also a book written some Schiz Kid mothers called “Angels With Broken Wings” for sale on this site) and https://www.healthline.com/health/schizencephaly
For more information about life-altering SDR, please follow this link to learn how successful SDR is and has been for decades: https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy
And to join the St. Louis Children’s Hospital Selective Dorsal Rhizotomy Facebook page and see the “before” and “after” successes: https://www.facebook.com/groups/161839724125/
Fundraising team (2)
Traci Wood
Organizer
Millington, TN
Katie Parris
Team member
