“Preach the Gospel at all times and when necessary use words.” -― St. Francis of Assisi

Tuesday, January 17, 2012

Meet Krysten:

Hi everyone. Today, I would like to introduce you to the little girl in the picture to the left - Krysten. I have never met this child, probably I never will. I realised today that it has been a very long time since I posted a child needing adoption on this blog, and friends, little Krysten really, really needs a family to love her and I am beyond honored to include her today.

Let me back up a little here to say that I don't know why I was browsing "AdoptUsKids.Org" hopeful I guess, that some of the kids I posted before might have been adopted by now. But I know I felt led there. And soon, after seeing this sweet little girl's face, I knew why.

Little Krysten is only 7, and she lives with a disease/condition called metachromatic leukodystrophy. Folks, my heart broke into a million pieces, this is a life-shortening disease. Let's get her a family to live it with for every blessed second she has got? Is she your daughter? If you can't adopt her can you please pass word of her along; on your facebook, your blog, the next time you are out with a neighbor? It doesn't matter where. Her family is out there. These kids deserve love and a family too. Like little Julia who had previously been diagnosed with Cockane Syndrome, who came home last year after an outpouring of love brought her to her family's attention?

The following is from Krysten's profile at adoptuskids.org:

Krysten is a sweet little girl who loves being in the midst of family activities. While she can contentedly watch TV, her favorite activities are having regular time with favorite adults, including visits by her birth mom, and being around children who interact and play with her.

A medically fragile child, Krysten's overall development is much like that of a non verbal baby who communicates primarily by facial expressions, such as smiling, or pointing and gesturing. While her care needs are extensive, Krysten seems to be content and accepting of what life has to offer without much complaining.

Krysten has an inherited condition called metachromatic leukodystrophy (or sulfatide lipidosis) caused by the lack of an essential enzyme, which results over time in an accumulation of metachromatic lipids in tissues of the central nervous system, kidney, spleen, and other organs that impact her health and her life expectancy.

In addition, Krysten has global (overall) developmental delays, a neuromuscular disorder, and seizures. Her special needs require that she be fed through a G-tube.

Krysten's routine care and treatment include daily medication and feeding regimens, frequent medical appointments, and attendance at a specialized school program for children who have significant developmental delays. Her adoptive parent(s) will need the interpersonal skills to interact effectively and cooperatively with doctors, therapists, and special education teachers on a regular basis, and will need to be proactive and creative in advocating for Krysten's needs.

Krysten is doing well in her school setting. Her IEP includes physical, occupational, and speech/language therapies, and incorporates goals for increasing her developmental growth and acquiring life skills.

Her physical and occupational therapies are helping her to increase her strength and range of movement in her limbs. Currently, Krysten's right arm appears to be stronger than the left arm and she is using it more than the other, but she moves both of them and is able to point and grasp a hold of toys and other objects. Although she has a wheelchair, she also crawls and walks about. When out of her wheelchair, Krysten really must have a caring adult nearby to provide highly attentive supervision as she has a propensity for getting into whatever is within her reach.

Her adoptive folks will need to have experience caring for medically fragile and/or significantly developmentally delayed children or, at the very least, be able and willing to learn a new specialized skill set.

It will be important for her adoptive family's well being to be able to strike an emotional balance between investing wholly in Krysten's growth and development while knowing that they may lose her prematurely; many children born with metachromatic leukodystrophy do not live into their teens. Given the circumstances of her special needs, Krysten deserves to experience life to her fullest capacity and to belong to a family and know that she is wanted. Patience, kindness, and the capacity to love and nurture will be parental traits that Krysten and Krysten's family recruitment team will value highly.

Ok everyone, let's past this on? Let's find her family. For more information visit her profile. Information for "the next step" is there. Thank you very much and have a wonderful day.

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