Nick's Fight: Butterfly Garden

Monday, July 11, 2011

Butterfly Garden

Most recently Nicholas learned about Butterflies at school. He brings his school projects home to share with his sister, and teaches her all he can. Nicholas really loved learning about the caterpillars and how they turn into Butterflies. We decided to get a Butterfly house, I was worried about keeping bugs captive. But I ordered them online anyways, hoping they would survive. I felt very guilty about ordering a creature and it being sent via mail.

The Caterpillars arrived safe and sound via the post office, and we ripped the box open! Nicholas and Bella gathered around the little container and they both said "OH, WOW", from that moment I knew i made a good choice to allow bugs in my home. Everyday we check on them and see how fat they are getting, they are all now at the top of the cup hanging ready to turn into beautiful painted lady's.

I started looking online at how i was going to release these little guys and give them the opportunity to survive. So...We started a butterfly garden. We planted parsley, ecineacia, Butterfly bush, marigolds, chives and mellons. It came together very nice and I suprised myself with making a "kid/butterfly" garden. This has made me feel so proud that my kids helped me plant and water the plants daily. Not to mention they see that our plants have attracted tons of new butterflies! Nicholas is learning the names of them while Bella is picking the flowers with the catapillars on them.

When I was doing my "Butterfly homework" I came across a wonderfull meaning of the butterfly. It made me think of Duchenne, my kids, my family.

If a child whispers a wish to a butterfly it will take that wish to the great spirit and it WILL come true. Because wishes only come true if the one who is told only shares it with the great spirit, sice butterflies cant make noise, your secret is safe.

So we will all be making our wish when we set our Butterflies free in the Garden. Can you guess what my wish will be?

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What Is Duchenne Muscular Dystrophy?

Duchenne muscular dystrophy (DMD) is a severe recessive X-linked form of muscular dystrophy characterized by rapid progression of muscle degeneration, eventually leading to loss of ambulation and death. This affliction affects one in 3500 males, making it the most prevalent of muscular dystrophies. In general, only males are afflicted, though females can be carriers. Females may be afflicted if the father is afflicted and the mother is also a carrier/ affected. The disorder is caused by a mutation in the dystrophin gene, located in humans on the X chromosome (Xp21). The dystrophin gene codes for the protein dystrophin, an important structural component within muscle tissue. Dystrophin provides structural stability to the dystroglycan complex (DGC), located on the cell membrane.
Symptoms usually appear in male children before age 5 and may be visible in early infancy. Progressive proximal muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed first. Eventually this weakness spreads to the arms, neck, and other areas. Early signs may include pseudohypertrophy (enlargement of calf and deltoid muscles), low endurance, and difficulties in standing unaided or inability to ascend staircases. As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue (fibrosis). By age 10, braces may be required to aid in walking but most patients are wheelchair dependent by age 12. Later symptoms may include abnormal bone development that lead to skeletal deformities, including curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs eventually leading to paralysis. Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for patients afflicted with DMD varies from late teens to early to mid 20s. There have been reports of a few DMD patients surviving to the age of 40, but this is extremely rare

What test are done to know if my son has DMD?

DNA test
The muscle-specific isoform of the dystrophin gene is composed of 79 exons, and DNA testing and analysis can usually identify the specific type of mutation of the exon or exons that are affected. DNA testing confirms the diagnosis in most cases.
Muscle biopsy
If DNA testing fails to find the mutation, a muscle biopsy test may be performed. A small sample of muscle tissue is extracted (usually with a scalpel instead of a needle) and a dye is applied that reveals the presence of dystrophin. Complete absence of the protein indicates the condition.
Over the past several years DNA tests have been developed that detect more of the many mutations that cause the condition, and muscle biopsy is not required as often to confirm the presence of Duchenne's.
Prenatal tests
If one or both parents are 'carriers' of a particular condition there is a risk that their unborn child will be affected by that condition. 'Prenatal tests' are carried out during pregnancy, to try to find out if the fetus (unborn child) is affected. The tests are only available for some neuromuscular disorders. Different types of prenatal tests can be carried out after about 11 weeks of pregnancy. Chorion villus sampling (CVS) can be done at 11–14 weeks, and amniocentesis after 15 weeks, while fetal blood sampling can be done at about 18 weeks. Women and/or couples need to consider carefully which test to have and to discuss this with their genetic counselor. Earlier testing would allow early termination, but it carries a slightly higher risk of miscarriage than later testing (about 2%, as opposed to 0.5%).