This is a group where we will connect you who have resources and items to donate with Caritas Zürich who work with families under the poverty line.
The CARITAS families need very specific items at specific times and CARITAS has very limited storage capacities. So in order to simplify the process of connecting a donor with a specific need we will post all the requests here.
Here is more information about the project in German: https://www.caritas-zuerich.ch/hilfe-finden/neues-lernen/copilot-erfolgreicher-schulanfang-fuer-ihr-kind
The reason why I’ve started this group is that I have two very close and trusted friends who work at CARITAS Zürich, who are working directly with these families in need. I know for sure that the items and resources will go directly to the family who needs it most.
As I have my own experience with SMA type 1 through our first born daughter Ingrid, I will do whatever I can to support you as a parent. I offer you free support via Skype, phone or in-person if you happen to live in Zurich, Switzerland.
Although we had excellent medical care and support for our daughter (probably the best in the world), we were pretty much left to fend for ourselves as parents and couple in grief. There was no support group or anything else available and I felt so utterly lonely and confused after we were given the diagnosis.
I just want you to know that you are not alone, and you don’t have to go through it alone. I’m here to listen and hold your hand, so please don’t hesitate to contact me. You are in my thoughts.
Lots of love, Karin
SMA Facts
SMA type 1
SMA is the leading genetic killer of children under 2 years.
What is SMA?
Spinal Muscular atrophy is a hereditary neuromuscular disease.
Heredity
Approximately every 40th person carries the gene for SMA. If parents are carriers , it is 25 % chance that the child has SMA, you must inherit the gene from both parents to actually get the disease. There are different variations of SMA, the most common is type 1 , and it’s also the most serious type. 4-6 children are born with SMA type 1 per year in Sweden and Switzerland. In the U.S., a child with SMA is born every 12 hours!
How SMA works
SMA causes muscle wasting (atrophy ) in all the body’s voluntary muscles. Muscle weakness is due to a deficiency of a protein called SMN1. This allows the motor neurons in the midbrain, medulla oblongata and spinal cord anterior horn to break down. In turn, this means that the signals sent from the brain to the muscles can not reach its full strength and it causes muscle wasting.
How do you recognise that it’s SMA?
SMA type 1 noticed within the first 6 months of a child’s life, and it manifests as muscle weakness. The child is quiet and never learn to walk, stand or even sit without support. Sucking and swallowing functions often disappear quickly and the child has difficulty eating. Breathing problems are common because the chest muscles are weak. Therefore, the child don’t have the capacity to scream out loud, like most other babies. Characteristic of SMA type 1 is small tremors / muscle spasms in the tongue.
SMArt kids
Intellect is not affected by SMA. The child will usually follow normal mental development and make eye contact and smile just like other children to the extent that muscle strength is sufficient.
SMA type 1 leads to death
Because breathing is so impaired, there is a high risk of pneumonia and other infections. When combined with progressive muscle weakness makes it that many children with SMA type 1 die of respiratory failure before the age of three, most often during the first year of life.
in children under 2 years of age
estimated SMA occurrence
unkowingly carry the gene responsible for SMA