This evening, my 11 year old niece Gabi went for a haircut. Other than trimmings every now and then, she hasn’t really ever had a haircut so her hair was very long. Tonight, she had 12 inches cut off that she will donate to Locks of Love.
Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis. We meet a unique need for children by using donated hair to create the highest quality hair prosthetics. Most of the children helped by Locks of Love have lost their hair due to a medical condition called alopecia areata, which has no known cause or cure. The prostheses we provide help to restore their self-esteem and their confidence, enabling them to face the world and their peers.
My sister said she was really nervous about doing it, but I know that when Gabi realized what an incredible act of kindness this is, her decision became much easier. Growing up with a brother with special needs, Gabi is very compassionate when it comes to other children with special needs and I know that she knows that she made a great choice. Hair can always grow back and hers was so long to begin with, it still looks beautiful.
I am proud of her and the kind and selfless decision that she made tonight. She is growing into a very kind and empathetic girl.
Tomorrow, February 28th is International Rare Disease Day. The objective of Rare Disease Day is to raise awareness about rare diseases and their impact on patients’ lives. It is held the last day of February every year. It was started in 2008 – a leap year, (a rare occurrence.) Every year has a different theme. This year’s theme is CARE, “Let’s join together for better care!” A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
Patients, families, friends, caregivers, scientists, physicians, researchers and health care providers come together to help raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families all across the world.
My nephew Mikey suffers from one of these rare diseases. His is called, Mitochondrial Disease. Tonight my sister is with some friends that she has met through this organization. They are out spreading the word about Rare Diseases.
According to The National Institute of Health,
There are about 7000 rare diseases identified in the United States. About 80 percent of rare diseases are genetic in origin and it is estimated that about half of all rare diseases affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening. Information is often scarce and research is usually insufficient. People affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support services for the patient and family. The goals remain for rare disease patients to obtain the highest attainable standard of health and to be provided the resources required to overcome common obstacles in their lives.
I am sure that every bit of recognition is a step in the right direction – so share and help to spread the awareness.
This morning, Drew picked this card from our Advent “Giving Calendar” “Do something especially nice and out of the ordinary for your sister or brother.” I decided to help my sister Kathi spread the word about the disease her son, my nephew, Michael has. It is called Mitochondrial Disease. Mikey has been in and out of the hospital numerous times in his nine years. He has had a colostomy and although he eats, he is only able to absorb small amounts of food by mouth. Therefore he has to receive nightly feedings through boluses which contain a high caloric formula. He is on the autistic spectrum and goes to a special school that can handle his medical needs.
I know that my sister and other Mito families are trying to spread awareness about Mitochondrial Disease. I have added some information about the disease that I found on mitoaction.org
I am sure Kathi would love for you to read about him. Michael’s story can be found on a Carepages site – Mystery Mikey.
What is Mitochondrial Disease?
- Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function.
- The incidence about 1:3000-4000 individuals in the US. This is similar to the incidence of cystic fibrosis of caucasian births in the U.S.
- There are many forms of mitochondrial disease.
- Mitochondrial disease is inherited in a number of different ways
- Mitochondrial disease presents very differently from individual to individual.
- There may be one individual in a family or many individuals affected over a number of generations.
What are the Symptoms of Mitochondrial Disease?
The severity of mitochondrial disease symptoms is different from person to person. The most common symptoms are:
- Poor Growth
- Loss of muscle coordination, muscle weakness
- Neurological problems, seizures
- Autism, autistic spectrum, autistic-like features
- Visual and/or hearing problems
- Developmental delays, learning disabilities
- Heart, liver or kidney disease
- Gastrointestinal disorders, severe constipation
- Increased risk of infection
- Thyroid and/or adrenal dysfunction
- Autonomic dysfunction
My sister told me about JoyJars today. Her son Mikey, received one in the mail today. I had never heard of JoyJars® before. I found out that they are a great way to send a little joy to a child fighting cancer or other life-threatening condition. Mikey has Mitochondrial disease. Mito affects almost every part of the body causing less energy to sustain the body. Mikey is 8 years old and has been through many treatments. He is a happy kid, who is doing very well in school and despite all that he has gone through, he is a fighter and puts up with a lot. Someone heard about his fight with mito and contacted someone at JoyJars and had a jar sent to him.
I did a little research to find out more about the jars and this is what I found:
JoyJars® were created by Jessica Joy Rees during her courageous 10 month fight with two brain tumors. Jessie used her JoyJars® to spread hope, joy and love to courageous kids across America fighting life altering medical illnesses. JoyJars® are stuffed with love and are:
- 100% free to patients and hospitals
- filled with new toys and activities
- for boys and girls
- for ages 18 and under
Her motto was “NEGU”, which stands for “Never Ever Give Up”. What a great motto for everyone to follow. This little girl was an inspiration for so many people and her joyjars can continue to make kids happy even when they are not feeling well. The smile on Mikey’s face was proof of that!
The website offered many ways to help; donating toys, purchasing tee-shirts and helping financially.
http://joyjars.negu.org/ Check it out when you have a moment.