Words of comfort ... courage ...

hi ... nama saya Muhammad Ammar Danish

This is a true story which i copied from Persatuan Sindrom Down Malaysia (PSDM) book. Everytime aku rasa down or bersedih mengenangkan keadaan ammar, aku bukak balik buku ni so that i realize that ada orang lain yg senasib ngan aku malah ujian mereka lebih hebat.

The story goes like this ...

I went through nine months of good pregnancy and had no problems at all but I went through a bad labour for 13 hours. As I was pushed to the labour room, I could still hear my other children saying, "Mummy, bring us home a beautiful baby boy".

It was like a bombshell when the doctor annouced that I had a Down Syndrome baby. I knew nothing about DS nor anything related to it. I went down on my knee to ask for help not knowing that there's no cure for Down Syndrom. When I got to know that it can't be cured I went through a very bad depression.

When my baby was only few days old, the doctors pronounced him as deaf, dumb and blind and that he will not survive through the week. I sought psychiatrist help for a year for my depression and emotional turmoil and kept asking my self "why me?".

Then I came across a book titled "why me?". The book was about a parent with two special children. It sent a message to me saying that God had chosen me to be this baby's mother. After reading that, I was determined to pull myself out of depression and do the best for my son Johan Rahmat.

(as i am typing this story, I couldnt stop myself from crying, tears came down like pouring rain)

I looked around for centers for physically and mentally impaired children. I attended many local and international conferences and invested in tapes and books which I share with the centers.

Johan was born with a hole in the heart and now has leukemia. Johan also suffers from another syndrome which is called the "Ectropian" syndrome because he was born with short eyelids and needs plasters on his eyes whenever he sleeps. I have to keep him by my side whenever I take him out.

The doctors said that he will go blind in his teens. I was told by the doctors to love Johan day by day and not to wait for tomorrow. Johan sleeps with one hand ties to me so that I'll be aware if he has a heart attack.

I want parents to realise that it is not the end of the world if their child has Down Syndrome. What is important is to have a support system which will let you know that you are not alone.

Johan is a fighter and he is also my best friend. He is a very caring and lovable child. He knows when I'm sad or happy. He can sense my feelings.

Bringing up a special child like Johan involves hardship and requires patience and love. Since having Johan, I have become very involved in the parents' support group and my home is always open to all mothers of child with Down Syndrome who needs emotional support and counselling.

Johan will also play his part by helping parents understand Down Syndrome child is and to give them hope for the future. I hope to go on doing this and I feel it is part of my life.

To all mums and dads, please welcome this child into your family and also give him or her lots of love. Remember, there is always light at the end of the tunnel waiting for you. God has sent you this wonderful baby for you to care for and there is always a reason to it. By having this child you will always be contented with life, be reminded to do good deeds and be close to God.

I believe we are very special people, and that is why God sent upon us this special child.

by Johari and Laila

Ammar in his 1st week

I really understand how Pn. Laila felt, I really do. For those who didnt know, Ammar is a down syndrome baby and was born with heart & gut problems. He has been diagnosed with lots of things since birth, but mostly concerning his lungs.

3 months old with life support in ICU

Lucky thing is his heart condition called (PDA) is not in failure but still need to be monitor closely with regular follow up & check up.

5 months old, still in ICU

Immediately after birth, Ammar was on life support for 30 days, in his first week, the doctor told us that he has 50/50 chance of life as at that time his liver swollen and his blood flows the opposite way (suppose A-B, instead B-A) plus the body has started rejecting the food & medication.

7 months old, in HDU again due to recurrent pneumonia



8 months old, in ICU after 'fundoplication' surgery

But Allah is great, Ammar beats all the obstacles and doctors prediction many times, he is a fighter too same as Johan ....

9 months, happy & free at home .. makin bulat!!!

If I were to write about Ammar's journey today then it will be the longest entry I have ever written. Maybe when I have time I'll write a book about Ammar's journey & my life as a mother to a wonderful and special baby.... just maybe.