Have you ever wondered about the extra challenges faced by the families of chronically ill children? Three-year-old Lauryn was diagnosed with beta thallassemia, a genetic blood disorder that disrupts the production of hemoglobin and often leads to severe anemia. We asked Lauryn’s mom, Christine, a few questions about how blood donors make a difference to her family.
UBS: Lauryn has beta thalassemia. How do you describe her condition to others?
Christine: Thalassemia is a rare genetic blood disorder that mainly affects people of Mediterranean and Asian descent. There is no cure at the present time. People with Beta Thalassemia do not have the hemoglobin gene. Thalassemics’ blood cannot supply oxygen throughout their bodies to vital organs or tissues. Both parents must carry the thalassemia trait in order to pass it to the child. The odds are 1:4 each pregnancy. My three-year-old daughter, Lauryn, is “surviving” solely on the blood that people donate.
UBS: How does this disease impact your lives every day?
Christine: Our lives are mostly spent at Phoenix Children’s Hospital. Lauryn gets blood transfusions every 3-4 weeks. She receives 250 cc’s each time. When Lauryn gets ill, even a slight fever, we have to rush her to the doctor to determine if she needs “extra blood” or additional treatment. Common childhood illnesses are more severe for thalassemics. Their immune systems are very compromised, so we need to be cautious. Lauryn is on an extremely expensive medication called Exjade. When people get blood transfusions, the iron from the donors blood accumulates in the body and is mainly deposited in the heart and liver. It’s called iron-overload. Besides not being transfused, iron-overload is the number one killer of people like Lauryn.
The medication, Exjade, is used to remove the iron deposits (also known as ferritin) from the body. It’s not 100% effective, but it definitely does its job! When you look at my baby, you would never expect that she had anything “wrong” with her. She is a happy, energetic, normal three-year-old. Even though she is only three, she’s taught my family so much – faith, courage and definitely hope!
UBS: Why are blood donors important to your family?
Christine: To put it into words….wow. Well, blood donors are the reason why my child is healthy and alive today. Fifty years ago, blood donors were scarce, and thalassemics only lived through their teens. Today, because of awareness and more information, thalassemics can live well into their forties!!! The fact is that blood donors are selfless, compassionate and willing to help others. They have no idea the impact they make every time they donate blood. I pray every night, before bed, thanking God for donors. l know in my heart that Lauryn will live a fulfilling, healthy, and successful life because of the gift that everyday angels give.
My life and family are complete because of blood donors. There is nothing in this world that I could ever do to thank them enough! They don’t realize it, but I hope they will, that they save people like my baby every day, and every time they donate, they truly do give “the gift of life!!”
“Every second, someone in the world needs blood.
And every step of the way, you have been there to fulfill that need.
Your generosity has been the hope and courage for thousands of those patients who suffer from Thalassemia. Thanks to your support, those with Thalassemia now continue to lead complete and full lives. All barriers have been brought down, and continue to be brought down, and many Thalassemic patients go on to do extraordinary things!
It is no doubt that blood is the vital need of all human beings. And this is most true for thalassemic patients.
Thank you for saving the lives of countless people. Thank you for being their hope. Thank you for being an abundant fountain of courage and support.”
The above was a thank you card, sent to our regular blood donors to mark World Blood Donor Day. A little background:
World Blood Donor Day builds on the success of World Health Day 2000 which was devoted to the theme “Blood Saves Lives. Safe Blood Starts With Me”. The enthusiasm and energy with which this day was celebrated indicated that there would be a positive response to an opportunity to give thanks to the millions of people who give the precious gift of life. It also builds on International Blood Donor Day organised annually by the International Federation of Blood Donor Organisations since 1995. – Courtesy: http://www.wbdd.org
Since 2005, June 14 is celebrated as World Blood Donor Day all over the world to thank millions of blood donors who have taken out time and donated blood for the needy. Being a Thalassemia patient, I know how important blood is for us. Getting blood after every 15 days is only possible because of the massive blood donors.
Blood is needed by many people around the world every second. This can be a mother giving birth, an accident victim, a boy with dengue fever or a father facing open heart surgery. And saving their lives wouldn’t be possible without blood donors. This saying certainly stands true: “You don’t have to be batman to save lives!”
On behalf of the Thalessemia community, I would like to thank the people who have saved lives and plan to save them in the future. It is because of you we thalassemics have a healthy life!
Your blood saved my life, thank you!
What FAiTh did on World Blood Donor Day:
Sent this beautiful card to our awesome donors around the Pakistan
Sent thank you text to our lovely donors registered in our donor system:
World Blood Donor Day
It is no doubt that blood is the vital need of all human beings. And this is most true for thalassemic patients.
From all the thalassemia community – Thank you for the blood that you donated 🙂 Thank you for the gift of life!
Wrote an article @ The Express Tribune
You can read it here: World Blood Donor Day: Thanking those who saves lives
Got ANOTHER shield for arranging blood camps for Fatimid Foundation Karachi
Nothing could have been possible if YOU were not with us. Thank you so much for love, support, care & the gift of life – Blood. Thank you!
Just like every year, Fatimid Foundation Karachi celebrated World Blood Donor Day today at Beach Luxury.
Fatimid has been celebrating Thalassemia Day, Hemophilia Day and World Blood Donor Day since few years. Celebration started at 8 pm with Tilawat-e-Quran, followed by Naat by a Hemophilia patient.
Welcome address was given by Dr. Waleed Bin Azhar (CEO – Fatimid Foundation), quiet an un-professional welcome address though, next was a speech by Thalassemia patient – Hina Zaheer, very well delivered.
Next on dice was Dr. Zahid Hasan Ansar (Provincial Programme Manager/Secretary Sindh Blood Transfusion Authority, Govt. of Sindh), though whatever he told is what we have been hearing from government, 7 new thalassemia centers going to be opened, but when.. that only God knows 🙂
After Dr. Zahid, Dr. Aieysha Humaira Khan (Hematologist, Fatimid Foundation) gave an over view on Blood Bank, how it works, how blood/platelets are being stored etc. She used power point presentation to give over view, quiet a bad impression – at least thats what I got.
After Dr. Aieysha, Lt. Gen. (R) Moinuddin Haider (Chairman, Fatimid Foundation) were called up on dice, He mentioned about the ad published in today’s news paper by Dr. Zahid on World Blood Donor Day, importance of donation and benefits of it.
According to Gen. Moinuddin, Fatimid collected 56,000 bags of blood in 2009 BUT gave 96,000 in return to the Thalassemia patients and outsiders, he mentioned the day to day progress of Fatimid, today Fatimid has ISO certificate and the same lab machines like Aga Khan have.
He even appealed to the government to work on Thalassemia centers and on prevention bill, I hope they listen to him.
After Gen. Moinuddin, Mr. Yasin Malik was called up on dice for a speech, quiet a good opening he did, mentioned a lot of good work done by Gen. Moinuddin and other fellows, mentioned some of the future plans. May Allah help you sir!
After the speech, shields, token of appreciation was given to the people who regular donate blood or arrange blood camps for Fatimid.
FAiTh was among the people who arrange blood camps and got a sheild:
In the end Dr. Mushtaq Memon (Incharge Blood Management Dept, Fatimid Foundation) thanked everyone for their participation and attending 🙂
New Delhi, June 13 (IANS) Six-year-old Anushka suffers from thalassemia and requires regular blood transfusion. However, arranging one unit of ‘A negative’ blood has become a nightmare for her parents, as summer brings an acute shortage of donors in the capital.
Delhi’s blood banks often dry up in summer owing to dwindling blood donation camps, which in turn rely heavily on student donors who are usually away on vacation at this time of the year.
“Mostly students contribute blood. With schools and colleges shut for summer vacation, the blood banks run out of blood and its components. There is a sharp fall in blood donation camps during summer,” N.K. Bhatia, medical director of Rotary Blood Bank, Noida, told IANS.
“There is so much shortage of blood during summer and on top of that many blood banks waste human blood – at least 30 percent,” Bhatia said.
“There is irrational use of blood in India. One unit of blood belonging to the same group can be used by three different patients,” he added.
According to a senior official from the blood safety division of the National AIDS Control Organisation (NACO): “India requires 10 million units of blood every year, but the country manages to get only 7.9 million units. Out of 7.9 million units, 68 percent is donated by volunteers.”
Delhi-NCR requires 600,000 units of blood a year (around 40,000 units of blood each month) but it gets only 400,000 units.
At least 100,000 pregnant women die every year because of shortage of blood in the country. Many thalassemia patients also die every year because of shortage of blood.
“Over 65 percent of our donors are from educational institutions. Most educational institutions are on holidays at this time and hence there is a huge shortage in supply. Usually during this time we ask relatives of patients to replace the blood,” said Amar Sharma, compounder at a civic body-run hospital.
Shortage of blood and its components during the summer gives rise to various illegal activities, such as illegal sale of blood, say health officials.
The price of rare blood group types like ‘O negative’ and ‘AB negative’ are quite high. In private blood banks, the processed blood of the above category can go up from Rs.1,500 to Rs.5,000 per unit. The prescribed rate by the government is Rs.500 per unit.
“Under the supervision of government authorities, the private blood banks can also organise blood donation camps. It will help in coping with the shortage of blood that arises during summer,” said Rasika Setia, consultant in transfusion medicine at the Dr. B.L. Kapur Memorial Hospital.
“The population we rely on for donating blood – students in schools and colleges – go on holiday during summer and there are no routine blood donation camps happening during this period,” she added.
Countering that no such shortage prevails, a senior official from the blood safety division of NACO told IANS on condition of anonymity: “There is no such shortage in the city so far. We have a good model of voluntary donations. Not only the student community but there is a mixed population now coming forward to donate blood.”
A volunteer from an NGO suggested ways to tackle the problem.
“Employees of IT and BPO industry can be approached for blood donation during summer. Mobile blood units should be set up at various shopping malls,” he said.