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Save lives of Children with Thalassemia

by Al-Mustafa Welfare Society
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia
Save lives of Children with Thalassemia

Dear Donors, Assalam-o-Alaikum. 

I hope you have a good day, and I am sure reading this report will make your day brighter and happier.

Today's report is unique in many instances and tells the tale of a brave young boy caught amid a life-threatening crisis from day 1 of his life. Let's read this inspiring story in his own words.

Hello, I am Hassan, the first patient in the Al-Mustafa Thalassaemia Unit at Al Mustafa Hospital. 

"I don't remember when I was diagnosed with Beta Thalassemia Major (also known as Cooley's Anaemia), but my parents told me I was around one year old," said Hassan.

Talking about his treatment and current state of health, he said:

"I've been under treatment for as long as I can remember. Every three weeks, I receive a blood transfusion to maintain my level of healthy red blood cells.

"Another part of the treatment involves taking Iron Chelation medications to treat iron overload, which results from the transfusions. From infancy until the end of middle school, I had to inject a drug called deferoxamine into my body four times a week. These infusions would take about eight hours for full administration. I think you can imagine how painful, exhausting and tedious it could be for a child."

"Thankfully, things have changed now. Instead of daily injections, I take a new oral medicine called deferasirox that I can take every night. It is hassle-free and makes my schedule much more flexible. I am thankful treatment is becoming more manageable for people with thalassemia."

I am 23 years old and work as a team member in the same Al-Mustafa Thalassaemia Unit at (AL MUSTAFA HOSPITAL). It gives me both happiness and a sense of satisfaction that I can give back to the organization and the Thalassemia community.

 "In the future, I would like to educate and give awareness to other patients who suffer from thalassemia," says Hassan. Hassan also volunteers time to get involved in Al-Mustafa Welfare Society's charitable activities and considers it his mother organization.

"Maintaining my treatment routine is my top priority. It can be challenging at times, but it's worth it. The future looks bright, and I'm looking forward to having the opportunity to give back to the thalassemia community."

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Assalam-o-Alaikum and Ramadan Kareem!

I hope this update finds you Happy and Healthy. 

Thalassemia treatment is not all about doing procedures and sending the child back home. It is a continuous therapy that involves hours of lengthy procedures such as blood transfusion and iron chelation pumps. Although it is much more expensive, most of our patients have been switched to oral iron chelation therapy. However, a parenteral treatment is sometimes needed according to the severity of the child's condition.

At Al-Mustafa Thalassemia Unit, we focus on turning this painful and tiring therapy into a pleasant one. Our thalassemia team regularly celebrates Birthdays, Picnics and other fun activities to keep the children engaged and make the treatment palatable.

The most challenging situation during the treatment is making the child sit on a chair with minimum activity during the lengthy procedures. Playing cartoons on screen is not enough. We needed a more colourful and playful funky environment to combat boredom during the session. We have planned to completely redesign and relocate the Unit to a more extensive and exclusive place, with a more child loving interior and space. But that will take more time. Meanwhile, we have placed some fun and coloured wallpapers, making the room more alive, playful, and exciting. 

On the other hand, the children are not coming slow with their parties and picnics.

Picnic at PAF MUSEUM

Al-Mustafa arranged a fun day out for Thalassemic Children at Pakistan Air Force Museum. This museum is one of the favourite venues of our children as it has everything interesting to offer the kids, from its lush green grounds to gigantic air crafts and the fun rides. Children got happy to the core. Their bright, toothy smiles and happy faces are enough to tell the day's tale. 

PIZZA PARTY

At Al-Mustafa Thalassemia Unit, when all the reasons for partying are consumed, the children start chanting THE PIZZA PARTY. On a lighter note: It is said that the relationship between the children at our Thalassemia Unit and pizza is two-way. The children keep on demanding the pizza, and it keeps coming their way. 

We missed you while eating the hot pizzas topped with molten cheese. 

I hope we can gather someday at this happening party and share lots of love, kindness and hot Pizzas. 

Take Care and Spread Joy!

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Assalam-o-alaikum / greetings!!!

We first posted this project in March 2020, and at that time, we had 125 patients registered with us. With your donations and the untiring efforts of our healthcare providers, our family has grown by 43 new members.

The children are grouped based on their age, as follows:

  • One to Five years                 52 Patients
  • Six to Ten years                    59 Patients
  • Eleven to Fifteen years         30 Patients
  • Sixteen to Twenty years        23 Patients
  • Twenty to onwards                4 Patients

You must be aware that Thalassemia is a genetic disorder, and the chances of survival are reduced with growing age. We are glad to provide free thalassemia treatment to 168 patients, which was possible with your generous donations. So now, with 43 new members, this crowded family of brave and happy children is fighting Thalassemia and sharing happy moments. 

At Al-Mustafa Thalassemia Unit, we provide comprehensive expert care for children and adults suffering from Thalassemia. The treatment of Thalassemia depends on the type of disorder, and it may include:

  • Blood Transfusion for correction of anaemia, based on severity.
  • Regular check-ups and continuous monitoring for complications of the disease and the treatment. 
  • Iron chelation therapy, to remove excess iron from the body
  • Multivitamins, in case of weakness.

Well, this is not it; Al-Mustafa Welfare Society has not limited its services to providing treatment for the suffering children, but a campaign to generate and raise awareness against the disease is also an essential part of our fight against this deadly disorder. The Thalassemia Campaign includes the following activities in this regard:

  • Public Seminars and CMEs regarding Thalassemia awareness
  • Parents' education regarding the care of the Thalassemic child.
  • Couple education about prenatal diagnosis.
  • Bear half of the cost of Chorionic Villus Sampling (CVS) of a couple whose child/children is already suffering from Thalassemia.

We are also working on other blood disorders and will establish a Haemophilia setup soon. 

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Hope you enjoyed the festivities of Ramadan and Eid (the holy month of Muslims followed by the festival of Eid) because the kids at Al-Mustafa Thalassemia Unit really did enjoy this season, along with some birthday parties. All the children were given gifts and new clothes so that they can cherish the festivities of the occasion.

Apart from the fun activities (which are the most important and attractive thing for the children, and it literally makes them look forward to their visits to the hospital) the following is the short summary of treatment and investigations/services provided to children at Al-Mustafa Thalassemia Unit during the past couple of months.

Blood Transfusion 

  • April, 21: 132 sessions
  • May 21: 129 sessions
  • June 21: 137 sessions
  • July 21: 133 sessions

Haemoglobin Investigations

  • April, 21: 161 Tests Performed
  • May 21: 158 Tests Performed
  • June 21: 136 Tests Performed
  • July 21: 152 Tests Performed

At Al-Mustafa Thalassemia Unit, we provide expert comprehensive care for children and adults suffering from thalassemia. The treatment of thalassemia depends on the type of disorder, it may include:

  • Blood Transfusion for correction of anaemia, based on severity.
  • Regular check-ups and continuous monitoring for complications of the disease and the treatment. 
  • Iron chelation therapy, to remove excess iron from the body
  • Multivitamins, in case of weakness.

Well, this is not it, Al-Mustafa Welfare Society has not limited its services to providing treatment for the suffering children, but a campaign to generate and raise awareness against the disease is also an important part of our fight against this deadly disorder. The Thalassemia Campaign includes the following activities in this regard:

  • Public Seminars and CMEs regarding Thalassemia awareness
  • Parents' education regarding the care of the Thalassemic child.
  • Couple education about prenatal diagnosis.
  • Bear half of the cost of Chorionic Villus Sampling (CVS) of a couple whose child/children is already suffering from Thalassemia.

We are also working on other blood disorders as well and are working on establishing a Haemophilia setup soon. 

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Dear Donors,

Hope you are doing well. The Thalassemia Unit at Al-Mustafa Hospital has been bursting with some good vibes as we have had our anniversary to celebrate with 8 new children who recently got registered and became part of our Thalassemia Family. But first I would like to give you a short summary of our services provided during the past couple of months.  

  • Blood Transfusion Sessions:
  1. December 2020: 135 sessions
  2. January 2021: 123 Sessions
  3. February 2021: 121 Sessions
  4. March 2021: 134 Sessions
  • Haemoglobin Follow-Up Tests (Laboratory examinations for proper evaluation of the state of Iron levels in the blood)
  1. December 2020: 155 Tests
  2. January 2021: 150 Tests
  3. February 2021: 149 Tests
  4. March 2021: 156 Tests

Apart from the above-mentioned services, all the children are being provided medicines such as Iron Chelation Therapy and supplements on regular basis as per their needs, assessed and prescribed by our Haematologist. We also provide other necessary treatments to our children for illnesses apart from Thalassemia because the immunity of these children becomes so weak and they catch other infections easily. 

The Thalassemia Unit of Al-Mustafa Hospital functions as a family, not only are we together in the battle against this disease but we also believe in celebrating different events just like a healthy family does, and what could be more important and the happiest occasion than the Anniversary of our very own Thalassemia Unit. A happy child is a healthy child and what else can we want more than, for our children to be happy and healthy, therefore, every year the anniversary day is a grand celebration, the children are mostly taken to a restaurant or an amusement park, but due to Covid, this year we kept the party a little low profile (just the party, not the spirits!). 


We really wish and hope that all of you could join us in person during these happy times very soon, but for now, we are sharing some pictures with you which saved a few of these happy moments.

We will stay connected and keep sending you new updates and once again, thank you for all the support and love. 

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Organization Information

Al-Mustafa Welfare Society

Location: Karachi, Sind - Pakistan
Website:
Facebook: Facebook Page
Twitter: @MustafaSociety
Project Leader:
Ahmed Raza Tayyab
Karachi, Sind Pakistan
$38,591 raised of $95,000 goal
 
115 donations
$56,409 to go
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