Physical Health Pakistan Project #44938

Save lives of Children with Thalassemia

by Al-Mustafa Welfare Society

Project Report | Jan 16, 2023
The Inspiring Story of a Little Warrior

By Ahmed Raza | Project Leader

Assalam-o-Alaikum, and a happy New Year to you and your family.

There are many inspiring stories scattered around us, but few are heart-touching. This is the story of a 10-year-old boy who outshined many around him.

A Story Of Courage

Mr and Mrs Abdullah were above the moon when they had their fourth child, a cute baby boy named Muhammad. Abdullah worked as a labourer, and his income was limited, but seeing the angelic smile of his baby made him forget all the worries of life. Little did they know that life would take an unpleasant and unexpected turn. They were clueless why their child's health continually deteriorated despite taking complete care of the baby. After visiting the physicians, it was revealed that their little boy had thalassemia. The parents were totally unaware of the severity of this deadly disease. The bright sunny day felt like a night when they learned that this is a genetic disorder, which remains with life, and life expectancy is pretty low.

For a few days, they were devastated, but the couple decided to fight for the life of their dear beloved child. They started looking for a cure, but the treatment itself was expensive. In Pakistan, how much does a labourer earn? This reality shattered Abdullah and his wife, who had started gathering their hopes for their boy. The initial three years were terrible, but one day someone told them about Al-Mustafa thalassemia Unit. It was a life-changing moment for the parents and Muhammad, who had turned 3.

Muhammad got registered immediately, and Al-Mustafa took his whole treatment responsibility. The parents took a relief of sigh. Now, Muhammad is ten years old, he goes to school every day, and as you can see, he is a bright, cheerful and energetic boy who doesn't let this reality stop him from living his life to the fullest; that he suffers from a chronic illness. He gets a Blood transfusion every 15-25 days and receives Iron chelation therapy and other treatments.

The most applauded part of Al-Mustafa's Thalassemia Unit is that our management keeps the children happy and engaged in fun activities; even when they come for their blood transfusion or to get other treatment procedures done, they are served their favourite things and play with their toys.

Quarterly Progress

In other news, our Thalassemia family has grown by 10 new patients, and now we have 212 patients registered at Al-Mustafa Thalassemia Unit.

Blood Transfusions Performed in the Past Quarter

Month No. Of Patients

September 171

October 192

November 182

December 185

Hb and other Investigations Performed in the Past Quarter

Month No. Of Patients

September 130

October 129

November 182

December 136

Anniversary Celebrations

The Thalassemia unit's Anniversary is celebrated every year with a big bash, and all the children and their whole families celebrate and enjoy it. This year, the venue was an Amusement Park + museum, "The PAF Museum Karachi". With its lush green gardens, gigantic air crafts and fun rides, it is our children's favourite place to party.

We hope that one day you may also join and meet us at one of our parties and be inspired by the courage and cheerfulness of these little champs.

P. S. The actual names of the characters have been replaced by fictitious names in respect of their privacy and to ensure their security, as per the policy of GlobalGiviving Foundation.

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Sep 2, 2022
Meet Hassan, the First patient of Al-Mustafa Thalassemia Unit.

By Arif Hussain | Project Contributor

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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Apr 13, 2022
Something Fun Happening at Al-Mustafa Thalassemia Unit

By Sarah Ahmed | Project Leader

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!

Links:

Find Al-Mustafa on Google

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