First Meeting of the Laron Support Group at the National Institute of Child Health, Karachi, Pakistan
Laron syndrome - most commonly referred to as Growth Hormone Insensitivity (GHI) - is a rare genetic illness that affects children. When properly diagnosed Laron syndrome can be treated, but when left untreated, children fail to grow in stature, and their final adult height is significantly reduced. This has a very negative impact on their quality of life and fulfillment of their life potential.
Treatment cost can vary from USD 700-1400 or more per month per individual patient with duration of treatment lasting many years. Considering the economic inflation in Pakistan currently (an estimated 25% in a country whose GNI per capita is US dollars 770 (UNICEF – 2006)) the treatment for even well off families seems like a far-fetched dream.
in Karachi has 15 diagnosed cases registered in their outpatient department, but at January 2011 only two children are receiving treatment. The goal is to change this situation for the children, so they can enjoy the best quality of life possible.
What is the Laron Club doing?
Under the leadership of Professor Jamal Raza, NICH and the families have come under one platform so that funds can be generated to arrange treatment for all GHI patients. At the inaugural Laron Club Meeting on 11th January 2011 the following steps were achieved:
1. All families now understand the disease, high cost of treatment and the complex procedure by which the drug has been made available in Pakistan.
in providing free genetic testing and their help in making treatment available for Pakistani patients was explained to the families.
3. Agreement reached that all fund raising will be done under the banner of Atfaal Welfare Society (regd.) and the National Institute of Child Health.
4. A special section on the Atfaal Welfare Society website will be designated totally for GHI which will firstly attempt to explain the disease in simple layman words and secondly will also contain precise instructions on how donations can be made for this cause.
5. All families will be assigned tasks based on their capabilities in short everyone will help pitch in for the cause.
6. Dr. Yasir Naqi Khan will coordinate all fund raising activities and will help in arranging monthly meetings so progress can be followed up.
7. Professor Syed Jamal Raza and the full faculty of the endocrine ward will be available for meetings with donors.
8. General awareness materials will be made available so that more and more people become aware of the disease and the high cost of treatment.
9. All online resources (Facebook, e-marketing etc) will be used to target foreign donors.
10. USAID will also be approached with the help of our foreign partners.
11. All families have given their consent to use their photographs on the website plus for any printable materials that may be required for the campaign.
This is a wonderful example of a community development approach to helping children who are living with chronic health conditions achieve their full life potential - when families are united they are empowered and can find a voice to improve the lives of their children.
Sincerest congratulations to the amazing team of committed health professionals at NICH for making these families' dreams a reality.