|
|
Information on the Trip to New York:
Great is Thy Faithfulness" "Leaning On The Everlasting
Arms", "Don't Give
Up", "God Will Take Me Through", "Precious
Lord", "What A Friend WE have In Jesus" "I Got A
Feeling, Everything's Gonna Be Alright"..."One Day At A
Time"
These are songs that kept me, blessed me, and stayed with me during my
entire
trip to N.Y. in search for hope for my son PT who has been diagnosed
with
Pompe Disease, and was told that there was no hope for his survival.
I was
given a letter signed by the physician based on expert findings from a
doctor in San Francisco, that PT has less than two years to
live....BUT
GOD!...What a mighty God WE Serve...
On Good Friday I left Sacramento in a motor home that had been
provided free
of all charges, and with what doctors said..NO HOPE.....but I returned
with
The RISEN HOPE after Good Friday's departure....that PT will survive,
and
that according to Dr. Slonim, one of four expert doctors in the world
on
Pompe Disease, that PT indeed had been miss-diagnosed and did not have
Classical Pompe, which indeed is fatal to babies...but rather had
Non-Classical Pompe and a great chance of survival with medical
attention and of course
PRAYER.
Prayer Changes Things.....
It changed the fact that I had no financial means of going to
NY.....until
Channel 13 News heard about my situation and did an interview,
followed by an
article in the Sacramento Bee. People responded out of love and
sent money along with letters of encouragement and prayers. Let
me tell you loved ones....of two incidents that made me cry:
- I received a letter from PT's
insurance (can't say the name for obvious
reasons), informing me that they would not pay for any medical
help from Dr. Slonim in NY, and if I went I had to personally pay
the medical costs. I
cried so hard, for two reasons.....I had already been blessed with
the means to go...and Dr. Slonim told me to come in any event pay
or no pay...that's just the humanitarian he is...and I rejoiced
with tears.
- Then I had tears of sadness, tears
for all the poor parents who did not
have the help I had received and who would probably do as I was
advised...Go home and make your baby comfortable and watch your
child die!! Oh how sad...and I realized those that
have...get...those that don't have.....Oh God!.... I cry for those
who do not know, or believe in God......I cry for the babies that
could have lived if only..........given the chance...and God cried
because we have missed the point of compassion that Jesus
demonstrated for the "children". The second incident
that made me cry is when I took the prescription that Dr. Slonim
had given me to the pharmacist in NY, He asked me what the
medication was for..and I told him for Pompe Disease...I asked him
had he ever heard of it..and he Said "No". I told
him that Dr. Slonim was helping keep nine, ten with PT, Pompe
Children alive until the enzyme replacement treatment can be
perfected and approved. He leaned back and with a frown and
outstretched
arms..said...and I quote exactly what he said...."You mean to
tell me that
Dr. Slonim is wasting his time trying to keep just nine or ten
babies in the
US alive until....(and I gave him a shocked look)...he stopped and
said..."Oh I don't mean to sound cruel"...and I said to
him.."but you are cruel", what would you do if it was
your son...just let him die?.....He tried to
apologize...but somehow he could not find the words...and I left
wondering
how many other people felt the same way......and I thought just
nine or ten
children....could be future doctors, scientists, artists,
teachers, if given
the chance to live. Thank God Somebody cares. Thank God somebody
sacrificed and sent donations...Thank God somebody prayed. PT is now on a strict high protein diet, with medication from Dr.
Slonim, and must gain weight, and remain as healthy as possible
until the enzyme
treatment is ready and approved. I met the young man and his
family The Crowleys, and of course Barbara, the Mom of John and
grandma of two precious children with Pompe. He too, did not
believe what the doctors told him...and has founded "Targeted
Therapy" in Oklahoma. I had chance to stay over night
in their home and left the next morning with toys, clothes, and
renewed strength to Hold On. I was invited to visit the
Research Center in Oklahoma and was introduced to the doctors,
chemists, scientists, etc...who are working endlessly to perfect
the enzyme,
and when it is perfected, PT will be among the first patients to
receive it. I am dedicated to using my talent to make the public aware of this
disease,
and would be happy to come to your church, community center, club
and
organizations to sing and speak on the highlights of The Miracle
Journey.
On a more personal note, I want to
thank once again, Jim Mitulski, Nancy Wilson,
Denis Moore who accepted Rev. Freda Smith invitation to come and
minister at
your church as well as Rev. Troy Perry and Elders at the African
American
Conference, and Rev. Yvette Flounder, Pastor of City of Refuge in San
Francisco who prayed and laid hands on PT, and Pastor Wayne of Griffin
Methodist Church, Las Vegas N.V. You are part of the
miracle journey is a special way. I am looking forward to
visiting MCC Dallas, and MCC Houston and Mount Pleasant Baptist Church
sometimes this fall. Continue to pray for us, and Nancy......I
believed you when you said. After we ministered at MCCLA, and
after you and the people attending the service prayed and laid hands
on PT." I can see PT as a young man, and I can still feel his weight on
my shoulders"....I can see him too!!.
Blessings,
Rev. Prentice T. Minner
|
