A GIFT OF SPEAKING AND WALKING
Donation protected
CHANTEL WAS DIAGNOSED WITH A VERY SUPER RARE CONDITION, GENETIC SYNDROME CALLED " TROYER SYNDROME" KNOWN AS SPG20, AS HEREDITARY SPASTIC PARAPLEGIA AFTER 4 YEARS OF SERIES OF TESTS AND SURGERIES.
CHANTEL WAS 3 MONTHS OLD WHEN SHE STOPS ACCEPTING FORMULAS OR ANYTHING BY MOUTH WHICH IS CALLED ORAL AVERSION AND FOUND OUT THAT SHE HAS LARYNGOMALACIA. THEY PUT HER ON NGT FOR A YEAR. UNTIL DOCTOR DECIDED TO PUT HER IN A G-TUBE FOR HER FEEDING.
AFTER G- TUBE SURGERY, SHE SUFFERED FROM GERD ( WORST FORCEFUL REFLUX/VOMITING FOR 4 YEARS) FAILURE TO THRIVE (WEIGHS 9KG FOR 4YEARS) GLOBAL DEVELOPMENTAL DELAY, STRIDOR, AND SHE HAD LOST HER SPEAKING AND WALKING AS WELL THAT AFFECTS HER GROWTH. SHE HAD BEEN THROUGH EYE SURGERY AND CONTINUE BEING MONITORED BY EYE SPECIALIST. HER OXYGEN LEVEL DECREASES TOO, THAT SHE WOULD TURN PURPLE WHILE SLEEPING.
THIS CONDITION HAS NO RESEARCH, NO TREATMENT, NO ORGANIZATION AND NO MONETARY FUNDING TO SUPPORT HER CONDITION. SHE IS THE ONLY ONE WHO HAS THIS CONDITION IN CANADA. WHEN PARENTS ASK DOCTORS AFTER THE DIAGNOSIS, WHAT IS THE NEXT PLAN TO TREAT HER, BUT THEIR ANSWER WAS THEY DON'T KNOW WHAT TO DO NEXT BECAUSE THERE IS NO RESEARCH FORT THIS CONDITION.
DOCTORS HAD TOLD THE PARENTS THAT THEY WILL ALSO LEARN FROM CHANTEL. HER PARENTS ARE VERY DEVASTATED AND VERY DESPERATE THAT THEY WILL DO ANYTHING FOR CHANTEL.
THE MOTHER HAD STAYED HOME FOR 3 YEARS BEING ON UNPAID LEAVE OF ABSENT WITHOUT PAY FROM WORK DURING RISKY PREGNANCY UNTIL SHE WAS BORN.
THEY ARE PAYING PRIVATELY OUT OF THEIR OWN POCKET AN INTENSIVE FEEDING, A MASSAGE THERAPY, AND BODY IN MIND THERAPIES.
CHANTEL WILL BENEFIT FROM PRIVATE SPEECH THERAPIES FOR HER TO LEARN TO SPEAK AGAIN IN WHICH SHE USED TO IF THEY HAVE FUNDING AND IN ORDER FOR HER CONDITION NOT TO REGRESS.
CHANTEL HAS TO REMAIN HEALTHY WHERE SHE IS RIGHT NOW OR SHOULD DEVELOP PROGRESSIVELY, AND ONLY THESE DAILY THERAPIES CAN HELP.
BUT BECAUSE OF FINANCIAL CONSTRAINTS, PARENTS CAN NO LONGER SHOULDER FINANCIALLY FOR ALL THESE DAILY ROUTINES /SESSIONS FOR HER WELL BEING.
HER MOM IS NOT CURRENTLY WORKING AND HAD TO APPLY UNPAID LEAVE OF ABSENT AGAIN BECAUSE SHE HAS TO LOOK AFTER HER DAUGHTER.
CHANTEL CAN NOT FUNCTION AT ALL BY HER OWN AND CAN NOT BE LEFT IN A DAYCARE BECAUSE OF HER COMPLEX NEEDS WITH A G-TUBE. CHANTEL'S OLDER SISTER HAD TO STOP FROM HER ACTIVITIES JUST TO SAVE MONEY TO PAY THE THERAPIES.
CHANTEL'S CURRENT CONDITION RIGHT NOW IS HEARTBREAKING BECAUSE YOUNGER KIDS HAD BEEN OUTGROWING HER AND WE CAN SEE IN HER THAT REGARDLESS OF HER CONDITION SHE IS VERY PLAYFUL AND SOCIABLE. THE PARENTS HAVE TO LIFT AND TRANSFER HER ANYWHERE AND WITH ALL HER APPOINTMENTS. ALMOST EVERY MONTH SHE WAS SICK WITH PNEUMONIA, AND SHE WAS EVEN ADMITTED IN THE HOSPITAL WITH RESPIRATORY IN DISTRESS AND ASPIRATION PNEUMONIA LAST DECEMBER 24-27, 2018.
CHANTEL HAS BEEN A PATIENT OF PARAPLEGIA, MUSCLE DYSTROPHY, AND PALLIATIVE PROGRAM.
THIS EXACT CHROMOSOME MUTATION HAS BEEN REPORTED IN THE SOUTHEAST ASIAN POPULATION AND IS CARRIED BY 0.02% OF THE POPULATION.
WE ARE HUMBLY ASKING FINANCIAL SUPPORT AND THE PROCEEDS OF THIS FUNDRAISING IS TO HELP SUPPORT THE EXPENDITURES FOR HER DAILY THERAPIES AND OTHER IMPORTANT ACTIVITIES TOWARDS HER DEVELOPMENT AND PROGRESS.
WE, THE NINONGS AND NINANGS (GODPARENTS) OF CHANTEL BELIEVES THAT THERE ARE NO LITTLE HELP, ANY HELP WILL BE GREATLY APPRECIATED. WE WOULD LIKE TO KNOCK ON YOUR HEARTS TO PLEASE HELP US RAISE THE FUNDS.
MAY YOU WILL BE BLESSED FOR THE HELP.
CHANTEL WAS 3 MONTHS OLD WHEN SHE STOPS ACCEPTING FORMULAS OR ANYTHING BY MOUTH WHICH IS CALLED ORAL AVERSION AND FOUND OUT THAT SHE HAS LARYNGOMALACIA. THEY PUT HER ON NGT FOR A YEAR. UNTIL DOCTOR DECIDED TO PUT HER IN A G-TUBE FOR HER FEEDING.
AFTER G- TUBE SURGERY, SHE SUFFERED FROM GERD ( WORST FORCEFUL REFLUX/VOMITING FOR 4 YEARS) FAILURE TO THRIVE (WEIGHS 9KG FOR 4YEARS) GLOBAL DEVELOPMENTAL DELAY, STRIDOR, AND SHE HAD LOST HER SPEAKING AND WALKING AS WELL THAT AFFECTS HER GROWTH. SHE HAD BEEN THROUGH EYE SURGERY AND CONTINUE BEING MONITORED BY EYE SPECIALIST. HER OXYGEN LEVEL DECREASES TOO, THAT SHE WOULD TURN PURPLE WHILE SLEEPING.
THIS CONDITION HAS NO RESEARCH, NO TREATMENT, NO ORGANIZATION AND NO MONETARY FUNDING TO SUPPORT HER CONDITION. SHE IS THE ONLY ONE WHO HAS THIS CONDITION IN CANADA. WHEN PARENTS ASK DOCTORS AFTER THE DIAGNOSIS, WHAT IS THE NEXT PLAN TO TREAT HER, BUT THEIR ANSWER WAS THEY DON'T KNOW WHAT TO DO NEXT BECAUSE THERE IS NO RESEARCH FORT THIS CONDITION.
DOCTORS HAD TOLD THE PARENTS THAT THEY WILL ALSO LEARN FROM CHANTEL. HER PARENTS ARE VERY DEVASTATED AND VERY DESPERATE THAT THEY WILL DO ANYTHING FOR CHANTEL.
THE MOTHER HAD STAYED HOME FOR 3 YEARS BEING ON UNPAID LEAVE OF ABSENT WITHOUT PAY FROM WORK DURING RISKY PREGNANCY UNTIL SHE WAS BORN.
THEY ARE PAYING PRIVATELY OUT OF THEIR OWN POCKET AN INTENSIVE FEEDING, A MASSAGE THERAPY, AND BODY IN MIND THERAPIES.
CHANTEL WILL BENEFIT FROM PRIVATE SPEECH THERAPIES FOR HER TO LEARN TO SPEAK AGAIN IN WHICH SHE USED TO IF THEY HAVE FUNDING AND IN ORDER FOR HER CONDITION NOT TO REGRESS.
CHANTEL HAS TO REMAIN HEALTHY WHERE SHE IS RIGHT NOW OR SHOULD DEVELOP PROGRESSIVELY, AND ONLY THESE DAILY THERAPIES CAN HELP.
BUT BECAUSE OF FINANCIAL CONSTRAINTS, PARENTS CAN NO LONGER SHOULDER FINANCIALLY FOR ALL THESE DAILY ROUTINES /SESSIONS FOR HER WELL BEING.
HER MOM IS NOT CURRENTLY WORKING AND HAD TO APPLY UNPAID LEAVE OF ABSENT AGAIN BECAUSE SHE HAS TO LOOK AFTER HER DAUGHTER.
CHANTEL CAN NOT FUNCTION AT ALL BY HER OWN AND CAN NOT BE LEFT IN A DAYCARE BECAUSE OF HER COMPLEX NEEDS WITH A G-TUBE. CHANTEL'S OLDER SISTER HAD TO STOP FROM HER ACTIVITIES JUST TO SAVE MONEY TO PAY THE THERAPIES.
CHANTEL'S CURRENT CONDITION RIGHT NOW IS HEARTBREAKING BECAUSE YOUNGER KIDS HAD BEEN OUTGROWING HER AND WE CAN SEE IN HER THAT REGARDLESS OF HER CONDITION SHE IS VERY PLAYFUL AND SOCIABLE. THE PARENTS HAVE TO LIFT AND TRANSFER HER ANYWHERE AND WITH ALL HER APPOINTMENTS. ALMOST EVERY MONTH SHE WAS SICK WITH PNEUMONIA, AND SHE WAS EVEN ADMITTED IN THE HOSPITAL WITH RESPIRATORY IN DISTRESS AND ASPIRATION PNEUMONIA LAST DECEMBER 24-27, 2018.
CHANTEL HAS BEEN A PATIENT OF PARAPLEGIA, MUSCLE DYSTROPHY, AND PALLIATIVE PROGRAM.
THIS EXACT CHROMOSOME MUTATION HAS BEEN REPORTED IN THE SOUTHEAST ASIAN POPULATION AND IS CARRIED BY 0.02% OF THE POPULATION.
WE ARE HUMBLY ASKING FINANCIAL SUPPORT AND THE PROCEEDS OF THIS FUNDRAISING IS TO HELP SUPPORT THE EXPENDITURES FOR HER DAILY THERAPIES AND OTHER IMPORTANT ACTIVITIES TOWARDS HER DEVELOPMENT AND PROGRESS.
WE, THE NINONGS AND NINANGS (GODPARENTS) OF CHANTEL BELIEVES THAT THERE ARE NO LITTLE HELP, ANY HELP WILL BE GREATLY APPRECIATED. WE WOULD LIKE TO KNOCK ON YOUR HEARTS TO PLEASE HELP US RAISE THE FUNDS.
MAY YOU WILL BE BLESSED FOR THE HELP.
Organizer
Joey Tabor
Organizer
