Healthcare for children with Down syndrome

Dear Supporters,

Individuals with Down syndrome have additional healthcare needs and this quarter we continued to support their needs and made healthcare accessible by hosting multiple clinics and camps. Your generous donations have helped to us ensure every child at KDSP gets an equal chance at a happy, healthy life. Some of the highlights from this quarter:

Behavior Therapy

KDSP’s Behavior therapy team successfully observed over 48 children. The team identified a tool that could be used for further assessment of children with behavioral difficulties. Lastly, the team set the criteria a child needed to meet before getting enrolled in behavioral therapy. Following their contribution, this quarter KDSP got on board an RBT making it possible for us to offer one on one behavior therapy sessions, classroom and therapy observations, and parent assessments.

General Pediatric Clinics

The general pediatric clinic was created to cater to the numerous general health concerns of individuals with Down syndrome through onsite consultations, thorough clinical checkups and follow-up appointments:

• 13 children benefitted from Dr. Razi’s clinic who works as Senior Clinical Instructor in Child Life Found Graduated from Sindh Medical College (DUHS).
• 33 children benefitted from Dr. Sidra’s clinic in November, a renowned Developmental Pediatrician.
• 11 families benefitted from a clinic in October with Dr. Salman (Director and Chair of Healthcare committee at KDSP, a Clinical Geneticist and Pediatric Endocrinologist, and also leads the Division of Women & Child Health at the Aga Khan University Hospital).
• 4 children benefitted from Dr. Anookhi’s clinic (Apple Tree Practice). The Apple Tree Practice was created to deliver top quality healthcare for all families holistically. Following their practice as the ‘The Pediatric Pod’ in Houston, they decided to bring that level of quality of care to Karachi as the Apple Tree practice. The clinic also introduced well baby and child checks which require specialists to review the growth and development of a child.

Aga Khan University Hospital (AKUH) Eye Camp

Over 25 children benefitted from Aga Khan University Hospital Eye Camp in November by Dr. Irfan. Considering the persistence of eye issues in children with Down syndrome the camp benefitted all those that needed to have their concerns addressed by ophthalmologists. 

Alvi Dental Camp

5 children benefitted from the dental camp in October and 2 children were further referred to orthopedic specialists. Following this camp, KDSP signed an MoU with Alvi Dental which allowed our children to avail free consultations and special discounts on numerous services. 

Story 

Halima is a 10-month-old girl with Down syndrome currently registered with KDSP. She is currently on the waitlist for all three early childhood intervention therapies. After multiple consultations and an ECHO to identify Halima’s heart condition, Dr. Saleem at AKUH recommended an angiography. KDSP, along with AKUH welfare, sponsored Halima’s angiography. The angiography went well and Halima is in good health.

Thank you,

Love,

Team KDSP

Dear Supporters,

Healthcare is a basic necessity and, we, at the Karachi Down Syndrome Program, work to provide different facilities to children with Down syndrome. It is with your utmost support that we are able to provide healthcare support to children with Down syndrome.

Following mentioned are some of the milestones that we were able to reach during this quarter:

• Partnership with Aga Khan University Hospital:

In April 2022, the Healthcare Department at KDSP signed a MoU with Aga Khan University Hospital to provide high quality healthcare services at subsidized costs for individuals with Down syndrome all across Pakistan.

80 individuals have already benefited via this fruitful partnership, and we hope to continue aiding many more.

• Cardiology Clinic at KDSP

KDSP hosted a Pediatric Cardiology Clinic with Dr. Fatima Ali (Pediatric Cardiologist, Aga Khan University Hospital) in June 2022. Dr. Fatima Ali held a clinical screening and parents counseling clinic for congenital heart diseases at KDSP.

10 individuals with Down syndrome consulted with Dr. Fatima at the clinic.

12 individuals had their test checkups completed. Dr. Fatima provided guidance on precautionary measures and future steps for individuals requiring treatment.

• Workshop at Indus Hospital

KDSP organized a one-day workshop at Indus Hospital in April 2022. The workshop invited physicians and residents of the hospital to attend a three part training covering the basics of care delivery for individuals with Down syndrome. First, in-depth knowledge was provided for general Down syndrome Awareness, then the healthcare aspects of Down syndrome were covered in the session ‘Managing a Child with Down Syndrome,’ which was conducted by Dr. Sidra Kaleem. Lastly, ‘Counseling and Guidance for Parents,’ was conducted by Ms. Rida Khan. The workshop was divided into three parts because it is vital to involve multidisciplinary personnel to contribute to the team approach that is required to provide effective care and management of health concerns faced by individuals with Down syndrome as we make the shift to a more inclusive society.

Testimonials from the families

“I still remember my first time here at KDSP, I was crying as I was worried about my son's health. When Muayeed was born, his first 5 months were spent in the hospital as he had a hole in his heart and he got really bad pneumonia. KDSP’s Healthcare services have enabled him to improve and live a healthy fulfilling life.”

Anita - Mother of Muayeed

Due to the unwavering support of our donors, we were able to provide these healthcare facilities to children with Down syndrome. We look forward to your contributions so that we can continue in our mission of achieving a more equal and inclusive world by providing access to healthcare to individuals with Down syndrome.

Thank you!

Love,

Team KDSP

Dear Supporters,

We are delighted to share the highlight of this quarter with you. It is only with your contributions that KDSP was able to provide support and healthcare access to even more families of children with Down syndrome.

Here is all that your generous contributions were able to achieve:

• 48 children benefitted from KDSP referrals to the Down Syndrome Clinic at AKUH, where they received appropriate medical intervention from renowned specialists.
• 9 medical tests were facilitated at AKUH through KDSP’s referrals
• 2 life-enhancing medical procedures were sponsored by KDSP
• 29 children benefitted from the Developmental Pediatrics Consulting Clinic at KDSP led by Dr. Sidra Kaleem, a renowned Developmental Pediatrician
• In February, the Healthcare Department at KDSP signed an MoU with Dr. Essa Laboratory & Diagnostic Centre to provide medical testing services at subsidized costs for individuals with Down syndrome all across Pakistan.
• KDSP organized an Eye Testing Clinic in March to help screen for common ophthalmological problems faced by individuals with Down syndrome. Testing was also done for refractive errors, and attendees were prescribed their glasses accordingly.
• Through a collaboration with US-based eyewear company, “Specs4Us”, KDSP also distributed free of cost eye glasses to the attendees requiring prescription glasses. These glasses have been specially designed for individuals with Down syndrome.

Some stories from the field

Huzaifa, a 15-year-old boy with Down syndrome, was registered at KDSP. His mother reported that he started experiencing fits and spasms back in 2021. After having a neurological assessment, Huzaifa was also diagnosed with epilepsy. Since then, he was put on a number of medications to help him manage his epilepsy diagnosis and prevent fits that could result in further neurological damage. KDSP helped provide Huzaifa with medicines, and all the support that was essential for his treatment.

Aged 6, Wasi was facing a drastic delay in his milestones. At the age of 5, his parents constantly worried about his health. Wasi’s development faced further challenges because his spinal alignment was out of place, and this affected his ability to participate in tasks. KDSP sponsored a thoracolumbar sacral orthosis (TSO) for his posture correction, and customized it for Wasi. With the usage of the TSO, Wasi has shown improvement in performance during therapy sessions, including increased sitting tolerance and subsequent participation in activities.

Mauyeed, aged 8, came to KDSP under quite delicate circumstances. He was severely ill and had spent prolonged periods admitted to the hospital ICU. In January 2022, Mauyeed underwent another bout of pneumonia which affected his already weakened immune system and lungs. KDSP, along with AKUH welfare, sponsored Muayeed's treatment, and since then, he has recovered and is in good spirits.

A Testimonial from a family

“Finding KDSP was like a ray of hope in the dark. My daughter was a weak child when she was born and her heart condition put her under a lot of stress. Despite residing in Shikarpur, I travelled to Karachi after registering at KDSP to get Umaima the best help possible. They not only provided financial assistance for her angiography but also supported us regularly with her medicines which she must take until she is stable and healthy enough to undergo heart surgery. The team at KDSP has always been there to listen to our concerns and provide for my daughter. I do not have the words to thank them for their support.” Mazhar, father of Umaima.

It is the unwavering support of donors like you that keeps us going in our mission of contributing towards healthier and happier lives of children with Down syndrome. We look forward to your contributions which will keep transforming lives and will create more beautiful success stories!

Thank you!

Love,

Team KDSP

Dear Supporters,

This quarter enabled families to smoothly access all our healthcare services for their children with Down syndrome as improvement was seen in the COVID situation post-vaccinations. Through the support extended by you, the following were made possible:

• 60 children benefitted from referrals KDSP made to the Down Syndrome Clinic at our partner organization – the Aga Khan University Hospital (AKUH), where they were able to receive appropriate medical intervention from renowned specialists
• 17 medical tests were facilitated at AKUH through KDSP’s referrals
• 4 children’s life-saving and life-enhancing medical procedures were facilitated at AKUH, sponsored by KDSP
• 16 children benefitted from the Developmental Pediatrics Consulting Clinic at KDSP led by Dr. Sidra, a renowned Developmental Pediatrician.
  
  

Some stories from the field

Muneeb was 4 months old when he came to KDSP with an unclosed hole in his heart. His parents reached out to KDSP for support and guidance. After referring with the team of doctors at AKUH, Muneeb was diagnosed with Complete Atrioventricular Septal Canal Defect (CAVC) by Dr. Babar. KDSP and AKUH decided to co-sponsor Muneeb’s surgery. Prior to his scheduled heart surgery, Muneeb also fell sick and underwent treatment for pneumonia and blood infection. As soon as he recovered and regained his strength, Muneeb was admitted for surgery in August 2021 to close his CAVC.

Ali is a 1 year old boy with Down syndrome, diagnosed with an autoimmune disorder. Ali’s doctors prescribed him an IVIG treatment for 2 years of his life to help boost his immunity until his immune system is able to improve its functioning. Since September 2021 Ali continues to receive monthly IVIG injections sponsored by KDSP to help him build his immunity and sustain his life.

Umaima was 1 year and 8 months old when she came to KDSP with complaints of heart issues. After consultation with Dr. Babar at AKUH, Umaima was diagnosed with an unclosed hole in her heart. Before proceeding ahead with surgery, Umaima was put on medication and had an angiography in October 2021 sponsored by KDSP in order to help assess the best way forward for Umaima. She has fully recovered since her procedure and awaits further decision.

Your unwavering support keeps us going in our mission of contributing towards healthier and happier lives of children with Down syndrome.

Love,

Team KDSP

Dear Supporters,

With the onset of COVID-19, it had become increasingly clear that certain groups were at higher risk of severe illness if they became infected with the virus. Individuals with Down syndrome are a vulnerable population as it is and are therefore required to take extra safety precautions. According to The Annals of Internal Medicine, a large study in the United Kingdom, people with Down syndrome who get COVID-19 are four times more likely to be hospitalized—and ten times more likely to lose their life.

To facilitate the children during this time, KDSP partnered with an online medical store ‘Dawaai’ to offer discounted medicines, tests and consultations to them and their families. Dawaai being an innovative pharmacy-led healthcare group aims to provide integrated pharmacy services with convenience and quality. 

Mother of Fatimeh availed Dawaai’s service and was very pleased with her experience. She gave her feeback in the following words, "The partnership with Dawaai was a great initiative by KDSP. The service was quick without any missing items which often happens with online purchases. They have incredible discounts and some ongoing exciting lucky draw schemes with fun prizes. My daughter and I have our fingers crossed as we are placing another order and hoping to win some prizes!"

The health and well-being of children with Down syndrome has always been KDSP’s top priority, increasingly more considering the situation at hand. KDSP’s partnership with the Aga Khan University Hospital (AKUH) has proved to be highly advantageous in terms of support and cooperation, with the following highlights for the past quarter:

• 26 children benefited from referrals KDSP made to the Down syndrome clinic at AKUH where they were able to receive appropriate medical advice from renowned specialists
• 6 children benefitted from sponsored consultations at AKUH through the donations made to KDSP
• 11 families benefitted from the free Behavior Therapy training for parents of individuals with Down syndrome conducted by Aga Khan University Hospital (AKUH).
• 12 individuals benefitted from life-saving and enhancing surgeries and medical procedures e.g. cardiac and intestine obstruction surgeries.

Mother of Usman expressed, "I felt at ease finding out that my son's consultation at AKUH was free of cost, thanks to the AKUH-KDSP partnership. It's a relief knowing that KDSP will always be supportive wherever my child's health is concerned".

Moreover, a Pediatric Cardiology Clinic was also hosted by KDSP in June that conducted clinical screenings of 15 children with Down syndrome along with counselling for parents regarding congenital heart diseases.

Thank you for all the generous support you have extended towards providing affordable, quality healthcare to children with Down syndrome. We look forward to your continuous support in helping children with Down syndrome lead healthy and fulfilling lives!

Love,

Team KDSP

Links:

• People with Down Syndrome Are at Increased Risk of COVID-19