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Please help Milo have the best life possible donations will always be used for something that helps him in his daily life
MEET MILO
#MIGHTYMILOMANDILORIAN My BEAUTIFUL SON BORN 2/7/20
HE HAD A RUFF START SPENT 21
DAYS IN NICU.
I Can't believe HOW LUCKY WE
ARE TO BE HIS Mommy ! HE WAS
ADOPTED FROM A VERY BAD
SITUATION HOWEVER, HE WAS
ALWAYS MEANT TO BE OUR SON!!....WE DID NOT KNOW IF HE WAS
GOING TO PULL THROUGH HIS
INFANT HEMOTOLAGY DID NOT
LOOK GOOD.
WE WERE TOLD THAT MILO COULD HAVE THALISIMIA...THEY RETESTED HIM 3 TIMES AND THEN WE WERE
TOLD MILO WOULD NOT GET SICK OR NEED MEDICATION !
JUST EDUCATING ON THE WAY
THALISIMIA COULD BE PASSED TO HIS CHILDREN SINCE
HE IS A CARRIER!
EVERY THING SEEMED WELL UNTIL HE BEGAN TO GET WEAKER
( HYPOTONIA ) UNDIAGNOSED AND WE WORKED W HIM TO BUILD
MUSCLE TONE.
THEN WE NOTICED THAT HE
COULDN'T SEE WELL AND WAS
ALWAYS LOOKING DOWN, AS WELL AS STARTLING EASILY.
Due to the situation with his birth and no prenatal care, we thought it was
"normal " for delays..and we were
waiting on genetics tests for 3 months..
This is what happened!
Milo's test Results Some info was
redacted for safety reasons
A photo of the "cherry red spots "in eyes
Hello everyone let me start by saying that this was not an easy decision to reach out for help
however our son's life could possibly
be very short and he is in need of a few things to help him with physical
thearpy and most importantly his
comfort!
On 4/29/21 our lives changed forever. We took our son to the optimoligist at Nationwide children's hospital BECAUSE HE WAS ALWAYS LOOKING DOWN AND COULDN'T REALLY FOCUS...
The look on the optimoligist face said a lot..."cherry red spots" were found in Milo's eyes.
Genetics tests were already being
preformed to determine why Milo was having global delays , however they wanted rapid results due to the spots in his eyes.
A week later the phone call came..
confirmed infantile Tay-Sachs disease! I went weak and dropped to my knees why ?!...
I have never been so heartbroken to think that Milo would never get better
and would be losing his ability to sit ,
crawl, maybe even swallow,
and talking.... The
prognosis is never good with
Tay-Sachs disease. ALWAYS LEADING TO PREMATURE DEATH!
I began searching for information and answers on how I could save my
baby boy's life.
I was eventually told about the SIO
trials at University of Massachusetts
Our genetics councilor sent Milo's
records to the coordinator of the trial treatment.
We were told for 3 months Milo was a great candidate and really had our hopes set on possibly stoping the progression of his disease ...unfortunately the trial treatment didn't go well for the first baby girl that was treated and
the FDA had Halted its
progress by the time that
they were able to resume MILO WAS 20 months old..he would've needed to get the gene transfer at
However not all hope is lost
with much talk and debate with Milo's Doctors and amongst
ourselves , We have came to the conclusion that we really want
to pursue Stem cell transplant
efforts for Milo! I know that its not a Cure but it has stopped
progression of Tay-Sachs
disease in other children! Milo's medical team believes that he
can get through this and have
Positive Results!
The only downside is that it is
very expensive and we are
going to have to move to pursue this for Milo!
I kNOW THAT I WOULD BE
DEVASTATED IF FINANCE IS
WHAT STOPS THIS FOR MY
BEAUTIFUL BOY,MY EVERYTHING....WE DO PUT ALL WE
HAVE INTO MILO AND
TRYING TO Maximize his life!
If you can't donate please share
Everything Is Helpful!
We all 3 work very hard (myself, Rita Serrano( my partner) and,Beverly Norris( my mother) and every penny goes
to Milo's needs.
WE HAVE NEVER HAD ANY
BENEFITS FROM THE STATE OUR
INCOMES ARE OVER THE
THRESHOLD FOR CERTAIN THINGS. Defenatly MEDICAL
however no insurance will pay for the transplant....
https://Tay-Sachs Disease.Gov
PLEASE SHARE MILO'S STORY AND REMEMBER
EVERYTHING HELPS!
THANK YOU!
Milo's diagnoses confirmation
