HELP BABY KAI WITH HIS SMA TYPE 1 DIAGNOSIS

BABY KAI`S STORY

 

BABY KAI WAS BORN ON 09 DEC 2022 AND ALL SEEMED PERFECTLY FINE UNTIL ABOUT 5 MONTHS IN, WHEN WE STARTED NOTICING THAT KAI WASN’T MOVING HIS LIMBS OR HEAD AS MUCH AS HE SHOULD HAVE BEEN. KAI WAS DIAGNOSED AS HAVING SMA TYPE 1 (SPINAL MUSCULAR ATROPHY TYPE 1) IN JUNE 2023 AND THIS BEGAN OUR JOURNEY THROUGH HIS TREATMENT IN ST JAMES AND TEMPLE ST HOSPITALS. WE WILL BE ETERNALLY GRATEFUL THAT KAI WAS ABLE TO RECEIVE ZOLGENSMA BUT THIS TREATMENT WAS MERELY THE START OF WHAT IS GOING TO BE A VERY LONG AND DIFFICULT JOURNEY FOR KAI. THE TREATMENT RECEIVED SO FAR BY THE BRILLIANT TEAM IN TEMPLE STREET HOSPITAL MEANS THAT THE DIAGNOSIS OF SMA TYPE 1 IS PREVENTED FROM BEING AS AGGRESSIVE ON KAI`S TINY BODY AS IT WOULD HAVE BEEN, WITHOUT THE TREATMENT KAI WOULD LIKELY NOT MAKE IT TO HIS 2ND BIRTHDAY, HOWEVER KAI WILL NEED SO MANY ADAPTIONS TO HIS HOME AND EVERYTHING ELSE TO ALLOW FOR HIS DIFFERENCE IN TO HIS FUTURE LIFE.

 

BABY KAI`S CURRENT NEEDS

 

* HOSPITAL AND HOME VISITS FOR PHYSIO THERAPY

 

* PRIVATE PHYSIO TO COMPLEMENT THE HOSPITAL PROVIDED PHYSIO

 

* SPEECH & LANGUAGE THERAPY

 

* OCCUPATIONAL THERAPY

 

* SPECIALLY ADAPTED BUGGY

 

BABY KAI`S FUTURE NEEDS

 

 

* VEHICLE SUITABLE FOR WHEELCHAIR ACCESS

 

* SAVINGS FOR ANY TREATMENTS THAT MIGHT BECOME AVAILABLE IN FUTURE

 

* HYDROTHERAPY TREATMENTS TO TRY TO STRENGTHEN KAI`S LIMB AND NECK MOVEMENT

 

* PRIVATE PHYSIO NEEDS

 

ANY MONEY RAISED WILL BE FOR KAI`S EVERY DAY NEEDS AND TO MAKE HIS LIFE AS COMFORTABLE AS IT POSSIBLY CAN BE.

OUR HOPES AS PARENTS

 

LIKE ALL PARENTS, ALL WE WANT IS THE VERY BEST IN LIFE FOR OUR CHILD. WE HAD NO IDEA THAT WE WOULD EVER HAVE THE NEED TO SET UP A GO FUND ME PAGE AND TO APPEAL TO PEOPLE FOR HELP. KAI IS A FIGHTER IN EVERY WAY, HE HAS BEEN SO BRAVE THROUGH EVERYTHING SO FAR AND THIS IS OUR ATTEMPT TO TRY TO HELP HIM WITH THE FIGHTS THAT STILL LIE IN WAIT FOR HIM. WE ALSO HOPE TO RAISE AWARENESS OF THE DISEASE AND THE ABSOLUTE NEED FOR THE HEEL PRICK TEST TO BE MANDATORY FOR ALL BABIES SO THAT SMA CAN BE DETECTED AND TREATED BEFORE SYMPTOMS START, THEREFORE IMPROVING OUTCOMES FOR OTHER BABIES.