Hi My name is Frederick Seah, and my wife is Rebekah. My elder daughter is Beth and the younger one, Danielle.
Who is Danielle?
Danielle has been suffering from a medical condition called SMA – spinal muscular atrophy. Her muscles are unable to develop even as she grows older. This resulted in severe immobility which affects her respiratory and digestive system. Unable to move, to breathe and to feed herself, she needs the help of a machine and from her caregivers. At present, there is no cure for her.
It has been a twelve-year long journey, and we know that for these years, it has been a miracle for Danielle and for us. Twelve years ago, we were told by the doctor that she could, at most, live to 2 years old. However, the goodness of the Lord allowed her to survive on these extra years.
SMA affects her ability to be mobile. This paralysis requires 24 hours of constant care. From wiping off her tears (Yes! She cries because like all of us, she feels and gets emotional!), to constantly having to turn her body from side to side, Danielle requires 24/7 constant care. Danielle needs her daily physiotherapy to prevent contraction of muscles and body tissues on her limbs.
Every 4-5 hourly, we also need to suction the secretions in her mouth as she is unable to swallow. This is to ensure she does not get choked on her own saliva. She uses a milk pump to slowly pump liquid food through a feeding tube and directly into her stomach.
We have also engaged a special teacher to be by her bedside, to keep her mind active, stimulating her cognitive growth.
How did we keep going?
Friends, Danielle’s every moment in her fragile life, is in His hands.
It is laborious and tedious to take care of her, yet for us, she is a gift from God. We do not fully understand why all these happen but we know there is a purpose. We take a step at a time. We rely totally on God’s strength and His wisdom.
I thank God for His faithfulness, for His grace for not failing to provide resources and comfort along every step of the way. We saw with our eyes how God rescued her from death a few times. We continue to trust in Him for Danielle to fulfil God’s Holy plan. Someday in heaven, Danielle will have a glorious, fully functioning body which reflects the glory of God because Danielle is a blessed child of our Great and Loving God.
RDSS has been walking along us, providing some financial support through the Power For Life progam and the Medical Intervention Support (MIS) Scheme. It helps to subsidize part of our monthly electricity bill and medical consumables of Danielle. We also get to know and be connected with other parents are like us having a child with more medical challenges.
You may see that the present situation is and maybe difficult to carry on but press on ! We will soon see the light of the end of the tunnel. Love is not Rare.