"For you created my inmost being; you knit me together in
my mother's womb.I praise you because I am fearfully and
wonderfully made; your works are wonderful, I know that
full well." Psalm 139:13-14
different backgrounds, different cultures, and from all over the
world..God makes no mistakes! And although we don't understand the
hand of God is all of this, most of us involved with these children have
been blessed in ways that can't be measured by the world's standards. As
you review this page, my hope is that you will gain a new awareness, and
that you will pray for these kids and their families. Their trials are many;
not only as they deal with the medical community,and health problems,
but as they to deal with Government agencies for programs to help them
with their children. I am an LPN...I am a home care provider...I have been
touched by these kids..God has blessed me!
3/30/88- 12/27/04
Common Disorders in Trisomy: Feeding difficulties, GERD, Slow post natal growth ,
Apnea, Seizures (about 30% in first year). Developmental disability.Jacob also was born
with Tetrology of Fallot, involving 4 different heart defects..He had 2 Blaalock Tussig
Shunts, because surgery for repair was not an option..
Jacob loved life..He was an energetic little boy. We concentrated and bragged on the
milestones that he made, rather than on the things he couldn't achieve. We delighted with
each new thing that he did. He loved his musical, and switch-controlled toys.
Jacob learned most of his body parts, farm animals and their sounds, We were always
working with things for developing his fine motor skills. When the weather and health
permitted, Jacob went to a local public school, for a couple of hours in the morning,
where he enjoyed interacting with other "Special Needs" kids in his class. Jacob has
great parents, who have done everything possible to give Jacob every opportunity for
growth, and to enjoy activities, that all kids enjoy. Like so many parents with "Special
Needs" kids, it had been a struggle to get necessary funding and support from
Government agencies set up to "help" with support.. Many families have gone through
savings, have had to sell homes, and vehicles to obtain necessary services. Because
Jacob's mom knew and saw a need in the Western NC area, she started a support
network in the area for "new" parents, so that they could receive support right away..
Please pray for these families. We know that God has a purpose for each life that He
brings to us. May you partake of the blessings!
dedicated to providing support and understanding
to families involved in the issues and decisions
surrounding the diagnosis and care in Trisomy 18,
13 and related chromosomal disorders.Support is
provided during prenatal diagnosis, the child's life
and after the child's passing. S.O.F.T. is committed to
respect a family's personal decision in alliance with a
parent / professional partnership .
Info on Western NC
Exceptional Parents
present at birth. In 2004 a gene was discovered on chromosome 5; and there are now two
tests that can be done during pregnancy...Most of the signs and symptoms may be
recognized at birth or shortly thereafter. .As with other syndromes, individuals with CdLS
strongly resemble one another. Common characteristics include: Delayed growth and small
stature. Typical facial features include thin eyebrows which frequently meet midline
(synophrys), long eyelashes, gastro-esophageal reflux (GERD), Seizures, feeding difficulties
and developmental delay.
A note from Brent's Mom, Susan......
Brent would be able to talk in sentences if music was the oral language. He will sing things
like "Where is Brent?", before he is able to tell yo his name. To get him to understand what
we're saying, we use "Turn it on, on, on, make it go." Sing songs that part of the brain can
understand better than the communication portion.
Fine motor skills are his top skills.. Nuts N Bolts, 100 piece puzzles, Legos, Magnets, K-Nex,
and of course, his favorite, stickers..
Medical Issues: Stomach reflux, food allergies ( dairy products, food coloring), are the top
priorities in keeping Brent a smiling very cooperative, independent person..When he feels
good, he feeds himself, dresses himself, helps with making beds, loading the dishwasher,
cooking, and vacuuming...
Money for Recreation: Movies, eating out, science museums, concerts and extras, are the
greatest need for all handicapped people. If you don't know what to do for someone who is
handicapped, give them gift certificates for these types of activities..
Brent loves people and remembers a lot more than we think. He asks for his favorite friends
and therapists. If Brent cries, we know that he is in pain and will go to any length to find out
what is wrong.
Brent has taught many people what unconditional love is...He looks at people as equal and
forgives quickly.
Our Sunday School class has lifted us up in prayer, (sometimes daily), support, hugs, meals,
train rides, mentors to play with Brent. This is a must in the life of a family with a special
needs person.
THANK YOU AND MAY GOD BLESS YOU !
