We live with hope
Our toddler has spinal muscular atrophy, here’s what we’re dealing with.
Our little miracle, Aidan Press was born on 27 July 2009 with a rare condition called spinal muscular atrophy (SMA) Type 1.
SMA is a term for a specific disorder occurring following predestined death of the anterior horn cells, the motor units that control the movement of voluntary muscles.
Aidan is unable to sit without support and has lost movement in his legs. He also has trouble swallowing. He has been fitted with a feeding tube to help provide his body with the nutrients he needs as he has lost the ability to swallow liquids.
Babies who are born with this condition rarely live past the age of 2 years, but Mom and Dad are keeping positive. We put Aidan in God's hands and we are thankful for each day we have to spend with him.
Facts on spinal muscular atrophy
• Spinal muscular atrophy (SMA) is the leading genetic killer of infants and toddlers.
• SMA does not affect sensation and intellectual activity in patients, in fact they are often unusually bright and sociable.
• One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.
• DNA testing can be done to confirm diagnosis
Typical signs and symptoms of SMA Type 1
• Being generally floppy (hypotonia).
• Legs lying in the "Frogs Leg" position.
• Little or no movement of the legs (this does not always include the feet).
• Reduced movement or control of the arms.
• "Bell Shaped" torso, caused by breathing using muscles around the tummy area.
• Having fists clenched a lot.
• Sweaty hands
• Head often tilted to one side, even while lying down.
• Recurrent chest infections
• Weak or quiet cry
• Weak cough
• Flickering or vibrating of the tongue.
• Feeding problems, this could be sucking, swallowing, or digestion (or all 3).
While there is no treatment or cure for SMA we live for the hope that same day this will be possible and that no family ever has to go through the pain of living with SMA.
Aidan has taught us to live, love and laugh; enjoy each day, each hour, each second and hold on to memories that will last a life time.
To learn more and follow our SMA stars journeys you can visit bumblebeefund.co.za.
How does having a child with a life-threatening condition affect parents?