No parent wants to hear the words that their child has brain tumors.
Nor do they want their child to endure medical treatment after medical treatment.
When we adopted our daughter Makayla we were told with her medical diagnoises
she would not live till age 5 to 8 years old.
Makayla has a combination of two rare genetic disorders
which causes tumors to form over her entire body.
Many of these tumors are on her optic nerves of the brain.
And also these tumors are inoperatable tumors.
Makayla had just had her 14 birthday this April
and now her brain tumors have increased to over 30 tumors.
So far they are non cancerous tumors and at any time they can grow into cancer.
Our next step will be radiation to reduce the size of these tumors.
These are rapid growing tumors that effect nerve endings through out the body.
There is no one alive with this combination of genetic disorders for most children die before age 8 years.
Makayla has had tumors removed prior on her adernal gland and is being
monitor for tumors on her kidneys.
The last couple of days I have been chatting with another mother adopting
about treatments and surgeries.
With surgery out of the question there is the first step of radiation therapy.
But with any treatment there are risks and side effects,
There are also disadvantages of being radiation and also surgeries.
With the position of Makayla's brain tumors she has developed
some vision lost and with a surgery there is possible total vision lost.
Should our doctors chose to start radiation to stop tumor growth
she will lost sight immediately.
With our daughter being 14 years old she is aware of what may occur
with being a treatment and can not fully accept this.
During one conversation she had mention to us
she would rather slowing go blind that to have it taken away
immediately.
Yes eventually these tumors will take over and being
on her optic nerves there will be vision lost either way.
Brain tumors can effect not only areas of the brain but other areas
of the body such as motor control of the other areas of the body.
It can cause one's mind to forget to breath
or arms or legs to move.
With Makayla's medical case there has been only 8 known people
in the world with these two genetic combinations.
NF1 and Beckweiderman Syndrome
Much like the Elephant Man
she can grow external tumors as well as internal tumors.
And so far she has been blessed
the tumors on her adernal have been found early.
Our main worry is the ones that may develop on her kidneys
called WILMS TUMORS.
These tumors are fatal tumors.
So I ask for your prayers for a miracle for our daughter.
We adopted Makayla at age 3 years and knew of her medical condition.
Much like little Braska and Zach their medical is life threatening also.
No child should die alone or be alone ill.
Knowing that we are these children's last hope for adoption like
Makayla they deserve a family to love them.
No matter if they are very ill
they need a mother and father
and a family.
Again I ask for our children for your support and prayers.
God bless
