I have been on a secret project the last few weeks. I am so excited and honoured to be a part of it and I am glad I can now share it with you. A group of demonstrators have put together some awesome tutorial projects for you all to raise money for this special family. Madonna is a former demonstrator and a friend and I have followed along with their struggles right from the beginning. Let me share a little bit about their story from her Mum Madonna….
Lara was born on the 5th of November 2008. The fourth child of Mark and Madonna. She was different to her siblings. She looked different…she had twisted feet….she didn’t cry like the other babies. She didn’t move like them either. However, after a week in the nicu we were released to go home, with a paediatrician’s words ringing in our heads “She may or may not be normal, depending of if she does or does not reach developmental milestones.” She was given a diagnosis of Cerebral palsy at 5 months during a hospital stint to correct a floppy voicebox. During that stay she was also put on naso-gastric feeding (a tube down the nose and into her tummy). By one she had started having seizures and had a number of other “foibles”.
Over the last seven and a bit years Lara has had many hospital stays with a number of illnesses. She has been diagnosed as having a “life-limited” condition. We do not know what that means. We do know that she is unable to talk or walk. She cannot communicate via traditional words or even gestures as her ability to control her limbs is very limited. What she does do is convey her love through her eyes. She verbalises some sounds and is very quick to moan and whinge if she wants to be moved or has a full nappy!
Lara has a plethora of drugs each day to keep her seizure activity stable. This is mostly successful but a simple cold can be enough to put us in hospital for a little visit due to her compromised immunity and poor lung function. She needs to be moved into different positions to help her manage her secretions and to prevent pressure areas.
One of the items we are looking at fundraising for over the next few months is a better pressure mattress for Lara’s bed. She has a hospital bed that we are able to manoeuvre into various positions for her (tilt, height etc) but the mattress is very simple and we use an egg shell topper at the moment to assist in the pressure management. We (actually, Mark..mostly) move her from side to side during the night to alleviate the risk of pressure areas. An appropriate mattress can help with those risks.
We are so grateful to all of you for always being willing to put your hands up to help us to Help Lara. She is a delight and a blessing. If you have ever gazed into the depths of her gorgeous blue eyes you would understand she is a special little person in more ways than just her diagnoses.
If you want to read more about Lara’s Life you can visit her Facebook page HERE.
So will you help us out? You can from anywhere in the world.
HOW IT WORKS.
For $15 you will receive 15 projects each day for 15 days! That’s $1 per tutorial! All the money goes directly to help get this family this special mattress. Let’s help give them a good night sleep.
This fundraiser runs from 1st May to the 15th May. You can join at any time during that time and still receive all the tutorials.
Drop me a comment and I will get back to you with the payment details (by bank deposit or Paypal) and to add you to the special Facebook group where you will access the tutorials. If you haven’t got Facebook but want to join in then please let me know that too. 🙂
Here is a sneak of my project coming up soon.
So let’s do this. I am joining in as I want to get all these great tutorials but more importantly help this lovely family.
Jenny
