Campaign Ended! The campaign ended on May, 21 2017
Dear Supporter. I am home-maker and full-time mother from Vadodara (Gujarat) having 4-year-old Aryaman born with Down’s Syndrome (DS). A child with DS can have multiple defects starting from heart disease, hearing loss, vision problems, dental problems to multiple physical & mental disabilities and risks of developing major diseases such as leukaemia, Alzheimer’s disease etc. as they grow-up.
We were a small happy family waiting for Aryaman to come to this world on his expected due date of 23rd April ‘13 although he was in bit of a hurry and arrived on 15th March ‘13 itself. Unaware of any such condition like DS, we were routinely going through our pre-natal check-ups and all my blood tests and USGs were normal. Indeed, Aryaman was born through a normal delivery but our happiness was very short lived. In the Initial one month Aryaman couldn’t be breast-fed owing to his very low muscle tone. He was in & out of NICU due to his low immunity & improper breathing pattern.
Our initial days dealing with DS were very tough as even his paediatrician gave us a very negative picture of DS indicating risk of permanent immobility, severe Mental Retardation & low life-expectancy. We went through some of his check-ups prescribed for a child with DS and all our nightmares came true. Aryaman was diagnosed with ASD (Atrial Septal Defects) which means two holes in the heart, bilateral cataract with very low vision and profound hearing loss.
Presently his ASD is cured. Though he had to undergo surgery for both of his eyes to remove cataract when he was three. He also underwent another surgery at the age of one for an anomaly in his stomach. We have seen Aryaman going in NICU for 5-6 times & these were one of our most difficult times. Hearing aid has been prescribed. There are still major delays in his mental & physical development.
Recently we came to know about Institute of Achievement of Human Potential in Philadelphia, USA founded by Dr. Glen Doman. For the past 70 years or more, this Institute has had numerous victories in terms of physical, physiological and intellectual development of brain-injured children like Aryaman.
Aryaman, me & my husband (Rajeev Sharma) have to visit IAHP in Philadelphia for evaluation of Aryaman and design a specific program for him which will be followed by Intensive treatment in which we must visit Philadelphia every 6 month for few years till the program succeeds to bridge the gap between his actual age and brain age which is presently 33 months (at 42 months’ age).
Cost for our first visit to Philadelphia planned in June ’17 shall be (for Aryaman, me and my husband):
Flight cost - $ 3600
Evaluation Cost - $ 3800 (which will increase to $ 5400 during intensive treatment)
Stay & food - $ 2000 (for 2 weeks)
Medicines & kits - $ 500
Therapeutic Equipment - $ 600
Total - $ 10500
We have spent huge amount; 1. for his three surgeries, 2. medicines & 3. daily therapies (like Physiotherapy, Occupational, Sensory Integration and Speech therapy) till now, as no Insurance in India covers someone with DS. Now we are struggling to finance the further treatment of Aryaman with IAHP with only one income, my husband's. We request your support help us to fund the treatment of Aryaman.
Aryaman has a zeal to learn, to survive, to prove a point to the world that he can do what other kids of his age can do. What he needs is lots of support, training & a well-designed program from IAHP to live an independent life.
Kirti Singh (with Rajeev Sharma)
1. When Aryaman was 1 day old
2. When Aryaman was few weeks old. Lost all the weight after staying in & out of NICU
3. Invitation from IAHP - 3 days evaluation, 4 days teaching the program
4. 2D Echo report indicating ASD
5. 2D Echo report continued
6. BERA (hearing) report indicating hearing loss
7. Eye report indicating bilateral cataract & horizontal nystagmus
8. Aryaman dancing on the music of Sujeet Desai (Global Face of Down Syndrome)
As we have nearly reached our date to visit IAHP, we are concluding this fund-raiser. This campaign will last till 13th May now as the funds raised will support us during our visit to IAHP in June. We once again request everyone of you to circulate our request among your colleagues and family members.
We are really very thankful to all supporters and well-wishers who kept our hope to treat Aryaman in IAHP going.
Kirti / Rajeev
With heart-felt thanks to everyone, we would like to inform that we have reached 78% of our set goal. We are nearly there ! The goal is not too far and so is our date of travelling. Please keep sharing within your network with some personalized words about us.
We shall be visiting IAHP in 2nd week of June. We intend to keep everyone informed about Aryaman's progress after we visit the Institute and we will find a way to do it through Social Media. What we have received from the Society is a loan and we owe it to the Society.
The fund raised now should be good enough for our 1st trip but we are planning to make atleast 3-4 visits and hence have also consolidated our own funds.
Thanks one and all for everything.
Kirti / Rajeev