My Princess Danielle

My name is Frederick Seah, my wife Rebekah , and my elder daughter Beth  and Danielle. Danielle has been suffering from a medical condition called SMA - spinal muscular atrophy. Her muscles are  unable to develop as she grow older. This results in her severe immobility  which affected  her respiratory system and her digestive system. She is unable to move, breathe and to feed herself without the help of machine and from helpers. Presently there is no cure to her condition. It been a ten year long journey,and we know that these ten years had been a miracle for Danielle and for us.  Ten years ago, the doctor said that she can last only at most two years. But the goodness of the Lord allowed her these extra years. The condition affects her mobile  ability. This paralysis requires 24 hours of constant care. From wiping of her tears(yes, she crys because like you, she can feel, she can sense and she gets hurt),  to turning her body constantly to cha...

On the 23rd April 2015, Kaeyln 3 yrs old went home with the Lord. To my BFF Kaeyln ....every time we meet, even though we didn' t utter a word, we already understand each other like old friends.. I thank God we have many sweet moments together... We held hands together, watched shows together, fight virus bravely in the same ward, cared by the most caring Dr Chan and most lovable Dr Chong...  Thank you for being my friend. It is because of you,my mummy and daddy found support and comfort... When you see Jesus, please say HI for me. We will surely meet again in Heaven. And we will hold hands together, watch shows together and worship our Heavely Father together... Till we meet again, i will surely miss you.. Love you always, your BFF Danielle

For the past 2mth, every week Danielle's teacher has been faithfully coming to teach her. Initially we are thinking 90 min is bit challenge to her due to past experience. It turn out well and each time we hear the feedback from her teacher it just so encouraging. below are some of her finger art works.

holding a slice of bread holding a strawberry The last time that we place food into Danielle mouth was 5 years ago. While she was 5 to 7 months old, she had a taste of baby food. But every since then, food has never been in her mouth but mostly the suction catheter to suck out her secretion and phlegm. There a period of time, it create a fear in her that anythings went into her mouth mean will hurt her. She will bite the suction catheter everytime we try insert it into her mouth. Nowadays it doesn't happen anymore as she lose much of her jaw strength. But we do notice that she able to rise her chin that really require much strength to do it.

There are time where we rush to Danielle's room to the sound of alarm from the oximeter, later to find out that it a false alarm. From Danielle facial expression - we can tell that she seeking attention. Wondering if she figure out that the alarm from the oximeter really get everyone attention.

Eversince the mask was off from her face, she has lesses discomfort on her face. We begin to see more facial movement and her vocal has strengthen. There are time where we thought we heard a siren but actually it is Danielle complainting. We're still hoping Danielle will regain her smile back.

For the start of the New Year 2011, my elder girl enter primary 1. Both me n my wife were busy waking up early morning to prepare her to school. This been her 3rd week in school, glad that she adapting well. In the school, they has a buddy system where they will be paired up to buy food from the canteen. Beth was pair up with a primary 2 girl during the 1st week and by the 2nd day of the 2nd week. Beth able to buy food for herself and even try out other food stall food. She is so proud of her achievement that she can't wait to share it with us. Both me and my wife, are so happy for her. Over this weekend, both my girls with be celebrating theirs birthday. Ya, Beth and Danielle was born in the same day but different year by natural birth. Beth can't wait for that day to come and she even designed her inviting cards to invite her classmates. As I look back year 2010, there so much things had happened and changes be made. Although some changes turn out not to what we expected. I s...

Previously Danielle not able to tolerate the upright position. Now she able to and play the computer game.

I was going through photos of Danielle that I come across this. Photos was taken few hours after she was born, She born on the 22 Jan 2008, weighting 2.9kg.

As any other toddler, Danielle eager to explore the world around her. Except that she is different from the rest of the normal toddler. She do not have the strength to move herself around. But that doesn't stop her from exploring. She begin to touch and feel the things around her whenever she have the chance. As a parent, we see her learning path and we try all way to allow her to explore the world around her.

Danielle grew quite a fair bit. Most of her clothes are already too small for her. As we're trying out the clothes her sister used to wore,we realize she looks good in yellow. Danielle gave us a lovely smile which really brighten up our day. As you read this, may it also brighten your day too.