Bardet-Biedl syndrome is a disorder that affects many parts of the body. The signs and symptoms of this condition vary among affected individuals, even among members of the same family.
Vision loss is one of the major features of Bardet-Biedl syndrome. Loss of vision occurs as the light-sensing tissue at the back of the eye (the retina) gradually deteriorates. Problems with night vision become apparent by mid-childhood, followed by blind spots that develop in the side (peripheral) vision. Over time, these blind spots enlarge and merge to produce tunnel vision. Most people with Bardet-Biedl syndrome also develop blurred central vision (poor visual acuity) and become legally blind by adolescence or early adulthood.
Obesity is another characteristic feature of Bardet-Biedl syndrome. Abnormal weight gain typically begins in early childhood and continues to be an issue throughout life. Complications of obesity can include type 2 diabetes, high blood pressure (hypertension), and abnormally high cholesterol levels (hypercholesterolemia).
Other major signs and symptoms of Bardet-Biedl syndrome include the presence of extra fingers and/or toes (polydactyly), intellectual disability or learning problems, and abnormalities of the genitalia. Most affected males produce reduced amounts of sex hormones (hypogonadism), and they are usually unable to father biological children (infertile). Many people with Bardet-Biedl syndrome also have kidney abnormalities, which can be serious or life-threatening.
As you can imagine we still have a lot to investigate. Sera will be having tests done on her eyes to check her retina's more closely. She has already lost some of her field of vision. She basically only has her central field of vision and we are not sure how good that is. We were told to expect total vision loss at some point. We will need to check her kidney and liver function. We already now that she has one cyst on her kidney. We will need to monitor that to see if she begins to produce more cysts. Her weight has become a huge issue already. She is screaming when we do not give her more food. Although we have already began to limit her food intake she still continues to gain weight. I am now working with a nutritionist and I am going to start measuring her calorie intake. Sera is also having issues with her endocrine system. She is already taking some medications and we will need to add a few more to regulate her system. We were also told to expect mild to moderate cognitive disabilities. Of course, we serve a BIG GOD and only HE knows her abilities.Additional features of Bardet-Biedl syndrome can include impaired speech, delayed development of motor skills such as standing and walking, behavioral problems such as emotional immaturity and inappropriate outbursts, and clumsiness or poor coordination. Distinctive facial features, dental abnormalities, unusually short or fused fingers and/or toes, and a partial or complete loss of the sense of smell (anosmia) have also been reported in some people with Bardet-Biedl syndrome. Additionally, this condition can affect the heart, liver, and digestive system. Taken from Genetic Home Reference
Holding my People Magazine and wearing my Project Hopeful t-shirt________________________________________________________________
I love my friend, Maggie. She is in my small group Bible Study. Maggie has the gift of creativity and serving others. She has combined those two gifts into a wonderful business. She has started a business which she calls Sweet M's. Maggie gives 100% of her profits to a family in the process of adopting. She was recently asked to showcase her items at a local store called The Charmed Life. Then, this week she was featured on our local newspaper, The Jessamine Journal. Please stop by her website Sweet M's and check out her store.
My Friend Maggie
This is my first Memorial Box Monday. I have been following Linny over at A Place Called Simplicity for a few years. So I decided it was about time I jump in. Although I don't have a Memorial Box yet. I think the first thing I will place in it is a picture of our home and my little pillow that says"where there is room in the heart there is always room in the home". 
I know. I know. I can't "save/rescue" every child and I don't plan to. I don't plan on "saving" anyone. That is the job of my Father in Heaven. My job is to be obedient in loving and serving others.
I don't want crown molding or cathedral ceilings. I don't need ceramic tile or high end appliances. I JUST WANT MORE BEDROOMS!!! A therapy room would be nice since we have therapist in our home 4 days a week. I want to be able to eat dinner at a table where everyone can sit together. I want a big enough yard for 8 or more kids to play in so they can run and play and heal. So I am falling on my face before my Heavenly Father begging and pleading for his favor. Please direct us to a home, a home that would be a place where we can serve you more. A home that would not make us boast but that would give you glory. PRAYING FOR A MIRACLE!!
