Spring Picnic

At the picnic on May 18th there were fun games and delicious foods.  All the people including me had an awesome time. We kids had fun playing at the playground, riding our bikes or scooters, and running around in the field. There were also a game which was three legged race. It was really fun playing that game. The adults had fun relaxing and talking with their family and friends. The foods were even better. There was barbecued hot dog and burgers that's smell filled the air. The Rescue Rangers also had a table. There you could sign up for our upcoming summer camp, donate to sick children, or fill in our survey. In the survey it had 2 questions. 1. Are you a organ donor? 2. If not, are you interested in becoming one. We got 17 people to fill it in. There was also a cake that read "Rescue Rangers". It was very yummy. That picnic day was a vary fun and exciting.

The Delicious Cake

Having fun in the park!

Cystic Fibrosis by Hana S. Hubert

               Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder. Cystic fibrosis (CF) is caused by a defective gene which causes the body to produce more then normal thick and sticky fluid, called mucus. This mucus builds up in the breathing passages of the lungs and in the pancreas, the organ that helps to break down and absorb food.This collection of sticky mucus results in life-threatening lung infections and serious digestion problems. The disease may also affect the sweat glands and a man's reproductive system.

                 Millions of Americans carry the CF gene, but do not have any symptoms. That's because a person with CF must inherit two defective CF genes -- one from each parent. An estimated 1 in 29 Caucasian Americans have the CF gene. The disease is the most common, deadly, inherited disorder in the United States. It's more common among those of Northern or Central European descent. Most children with CF are diagnosed by age 2. A small number, however, are not diagnosed until age 18 or older. These patients usually have a milder form of the disease. Please donate so that we can give the money to hospitals to continue to do research and help families that can't afford the expensive treatment.

The Park Day Picnic! by Hana Sabrine Hubert

             On Sunday May 18th, 2014, Zakat Foundation held a picnic at Fox Point Park with a breathtaking view of the Delaware River. The day was sunny and slightly breezy. Friends and families gathered in this lovely day to share a meal of grilled beef and hot dogs as well as fruits and desserts. Some adults took the time to take a stroll while enjoying the view. 

                The park was a perfect setting for kids to let loose and have some fun. Many of them were seen  having fun playing in the playground while others played a game of football. There were also those who rode their bikes and scooters all around the park. There was three legged races, which I participated in,  and balloon races. 

                 
                 The Rescue Rangers had a table to advertise their latest fundraising which is for the children's  hospitals. We are raising awareness about rare diseases that affect young kids and the possibility of being an organ donor. We gave away a beautifully decorated cake and also passed out survey questionnaires on organ donation. Most people were not organ donors, but some wanted to be, which means that in the future they might become one! Out 17 people, only two were organ donors, and 6 would like to be. We hope to do more surveys in various different places to raise awareness about organ donation.

              All in all, it was a lovely day to spend some time having fun.

 

Down Syndrome By Meryem Kose

Down Syndrome is a rare disease. When people have Down Syndrome they have 47 chromosomes when they are supposed to have 46. A chromosome is something in your body that makes you special. About  250,000 people have Down Syndrome in U.S. You can have Heart Defects. If you have a Heart Defect you have trouble breathing. You may also have memory loss, hearing loss, and a lot of other things. You can have slanted eyes, a short neck, a small mouth, and small hands and feet. They learn how to walk and talk later then normal children. There is no cure for Down Syndrome. I hope now you know what Down Syndrome is!

Picnic

On May 18, there will be a picnic. Come and enjoy fun time with your family and friends. There will also be a table for the Rescue Rangers. There you can donate and buy pretty bracelets. Of course, all proceeds go to the children who suffer from many different sicknesses and rare diseases. We will be also handing out a survey about if you are an organ donor or not. An organ donor is someone who lets doctors take their organs when they die. They do that so people who need those organs later can use it. Do not miss out this opportunity to become an organ donor! I hope to see you there.

Come and enjoy a fun time with family and friends!

Child Life by Hana Sabrine Hubert

   Child life specialists are pediatric health care professionals who work with children and families in hospitals and other settings to help them cope with the challenges of hospitalization, illness, and disability. They provide children with age-appropriate preparation for medical procedures, pain management and coping strategies, and play and self-expression activities. They also provide information, support, and guidance to parents, siblings, and other family members. Child life specialists collaborate with parents and other health care professionals to meet the distinct needs of children in managing the effects of stress and trauma. Because children may feel overwhelmed, child life professionals help children gain a sense of familiarity and control of their environment through play and exploration inside the healthcare facility. Understanding that a child’s well-being depends on the support of the family, they also provide information, support and guidance to parents, siblings, and other family members.

          I think that the Child Life section should have an area where they can create their own movie, so that they can express what they are going through, feeling, or love, in a cartoon. I have an app called Toontastic, and I created a movie based on a book I read, and I could draw the characters, and animate them through an adventure of my choice, and I could even choose the feelings for each scene. I hope that we can raise awareness so that the children can know that their are people out there that care.

MMA Methylmalonic Acidemia

Methylmalonic Acidemia by.Aadil Syed

Methylmalonic acidemia is also called MMA, and it is an autosomal recessive metabolic disorder.It is a classical type of acidemia.

Methaylmalonic acidemia stems from several genotypes and secondary hyperammonemia. The disorder can result in death if undiagnosed or left untreated.

Ginetic

The inherited forms of methylmalonic acidemia cause defects in the metabolic pathway where methylmalonyl-coenzyme A (CoA) is converted into succinyl-CoA by the enzyme methylmalonyl-CoA mutase.

Vitamin B is also needed for the conversion of methylmalonyl-CoA to Succinyl-CoA. Mutations leading to defects in vitamin B₁₂ metabolism or in its transport frequently result in the development of methylmalonic acidemia.

This disorder has an autosomal recessive inheritance pattern and this means that the defective gene is located on an autosome, and two copies of the gene—one from each parent and this must be inherited to be affected by the disorder. The parents of a child with an autosomal recessive disorder are carriers ( a carrier is a person who has a g of one copy of the defeene but it is not dominant so they don’t hagenee it but their offspring may have it) , but are usually not affected by the disorder.

Nutrition

A severe nutritional deficiency of vitamin B₁₂ can also result in methylmalonic acidemia.^[6] Methylmalonyl CoA requires vitamin B₁₂ to form succinyl-CoA. When the amount of B₁₂ is insufficient for the conversion of cofactor methylmalonyl-CoA into succinyl-CoA, the buildup of unused methylmalonyl-CoA eventually leads to methylmalonic acidemia. This diagnosis is often used as an indicator of vitamin B₁₂deficiency in serum.^[7]

Pathogenesis

Methylmalonic acidemia has varying diagnoses, treatment requirements and prognoses, which are determined by the specific genetic mutation causing the inherited form of the disorder.^[4] The following are the known genotypes responsible for methylmalonic acidemia

Cerebral Palsy [also known as CP] By Anaum Allimulla

Cerebral palsy is a disorder of movement, muscle tone or  posture that is caused by an immature developing brain, most often before birth.In general, cerebral palsy causes impaired movement  associated with exaggerated reflexes, floppiness or rigidity of limbs and trunk, abnormal posture, involuntary movements, unsteadiness of walking, or some combination of these. People with cerebral palsy may have difficulty with swallowing and commonly have eye muscle imbalance. People with cerebral palsy may have reduced range of motion at various joints of their bodies due to muscle stiffness.

The effect of cerebral palsy on functional  abilities varies greatly. Some people are able to walk while others aren't able to walk. Some people show normal to near normal intellectual function, but others may have intellectual disabilities. Epilepsy , blindness or deafness also may be present. People with Cerebral Palsy often have underlying developmental brain abnormalities.

Cerebral Palsy is the name given to a number of motor problems which usually result from the damage done to the brain during early childhood. It is called Cerebral Palsy because the area of the brain that is damaged is the Cerebrum. It cannot be cured. Scientists are currently looking for a way to stop cerebral palsy from happening and to cure it. It is treated with therapies. The person affected often has trouble standing or walking. Those may also suffer from other problems such as learning difficulties or mental retardation. Did you know that 1 in every 400 children in the UK has cerebral palsy. Although there several types of cerebral palsy . Most people with this condition live as long as people without it. This is first identified by an English surgeon called WILLIAM LITTLE in 1860.

So please support and help us in our effort to raise awareness about various rare diseases !

Rare Disease: Autism

Many people know what Autism is. I am going to tell you more facts about it that you may not know.

 It is basically a mental condition present from early childhood. One person in every 68 children has Autism. One person in every 42 boys has Autism. Unfortunately, Autism doesn't have any cure. But just because someone has Autism doesn't mean that that person is bad. It just means that that person needs special care and a little more attention then a normal person. Just because someone has Autism doesn't mean they can't accomplish things in life. In fact an Autism child named Devin Ross actually made it to the Swimming Olympics! You can see that Autism people have special talents too.

Even though Devin Ross had Autism, he still went to
the Olympic Trials!

Autism children are special too!

AUTISM

There are many different type of autism. About one out of every 88 children in the United States currently has autism. About 36,500 of every 4 million children born each year in the United States will have autism. Autism is a brain disorder that often makes it hard to communicate with and relate to others. With autism the different areas of the brain fail to work together. Boys are nearly five times more likely than girls to have autism. There is no cure for autism. Most people with autism will always have some trouble relating to others. Autism tends to run in families, so experts think it may be something that you can inherit( which means passed to children from parents through genes). This condition came up as a result of a neurological disorder that has an effect on normal brain function, also affecting development of the person's communication and social interactive skill.
Autism typically appears during the first three years of life. Some children show signs from birth.

ASPERGER'S SYNDROME  is a kind of Autism where the person or child is very intelligent but have the same social problem and limited scope of interests as children with autistic disorder where kids and problems with communication and social interaction .
Smilarly , RETT SYNDROME is where children primarily girls start developing normally but then begin losing their communication n social skills. children with this syndrome are usually cognitively (meaning lack of memory , or judgement) impaired.
so come help raise awareness about Autism and spread some extra love and care to these children so we can see them smile :-)

 SO BE KIND TO EVERY KID BECAUSE THEY ARE SPECIAL IN THEIR OWN WAY...

Thalassemia by Hana Sabrine Hubert

                Thalassemia is a blood disorder that is inherited. The body makes an abnormal form of hemoglobin, which is the protein in red blood cells that carries oxygen. This results in excessive destruction of blood cells, which leads to anemia, meaning you don't have enough healthy red blood cells to carry adequate oxygen to your tissues. Thalassemia can cause significant complications, including iron overload, bone deformities and cardiovascular illness. If a person receives a beta thalassemia minor from his father and another from his mother, he will have beta thalassemia major. If a person received an alpha thalassemia trait from her mother and the normal alpha parts from her father, she would have alpha thalassemia minor. Having a thalassemia minor means that you may not have any symptoms, but you might pass that trait on to your children and increase their risk of having thalassemia. If you have thalasseemia major, you will have to get blood transfusions. It's important to know about rare diseases and continue extensive ongoing  researches, so please help us increase awareness, and donate.

 

Down Syndrome

There are many rare diseases that kids, teens, and adults suffer from. One disease is Down Syndrome. If you have this disease it means that you have 47 chromosomes than the usual 46  chromosomes your supposed to have. The condition can cause delay in the way a person moves, both mentally, and physically. It usually affects about 1 in every 800 babies born in the United States. Some physical features that happens because of this is flat facial profile, a upward slant to the eyes, small ears, and a protruding tongue. Most of the time babies that get this will be born at a normal size but as he/she gets older they grow at a smaller rate and usually shorter than their peers. Some mental problems are they can have delays in speech, and self-care like feeding, dress, and toilet teaching. There are many more affects that can happen because of this disease.  Let's help the people with Down Syndrome and try to stop the disease.

Let's help these people, and try to stop the disease. :)