Thursday, September 6, 2018

The story behind this year's New Year cards

If you receive regular mailings from the Malki Foundation, then you very likely have already seen the specially-designed Rosh Hashana cards that we produced for this year's New Year season. They're strikingly different from any previous year's and we're very  proud of them.

There are four designs, each card bearing one of those designs (all of them are here). Four cards, one of each design, were enclosed gratis with the annual report we sent out to our supporters in the past week. (We're of course selling them for anyone who wants to send them to their friends.)

There's quite a story that goes with the cards. It involves the Avni family – Gali and Keren and their two beautiful children Omri and Michal. For our purposes, their story begins three years ago when Michal was born. 

Gali and Keren realized there were problems with Michal’s development from about when she was two months old. Consulting doctor after doctor, they were given results and assessments that simply lacked clear answers. The uncertainty and fear - a phenomenon most new parents know - kept growing.

The young parents stayed hopeful. They felt the clarity they sought would emerge through genome sequencing - an expensive but illuminating process. And indeed those genetic results did throw some light on the mystery of their younger child. 

According to the diagnosis, Michal has an extremely rare genetic disease known until recently only by a cryptic string of letters and numbers representing a specific gene mutation: PPP2R5D. In the past year, that condition received its own name: Jordan’s Syndrome

There's very little that medical science actually knows about the condition. So to help their daughter, Keren and Gali set off on a worldwide search for information. They also sought out other families grappling with the same mutation in a child of their own. The social media helped - they found a support group for parents coping with the same very rare mutation and together with the other families they encountered this way, they are learning and researching.

They know they have a long road ahead - but Gali and Keren remain optimistic: “The potential is hidden in everything,” Keren told us. “It just needs to be seen.” 

The Malki Foundation has the privilege to facilitate essential paramedical therapies to Michal via our Therapies at Home Program. In Michal's case, this means Occupational Therapy, Horse-riding Therapy, Speech Therapy and Hydrotherapy. 

Now to the part about the cards. 

The original art-work for the Rosh Hashana cards (one of the four designs is at the top of this post) was done by little Michal herself. Her father Gali, a graphic designer by profession, then took Michal's creative drafts and, using them as his base, turned them into the sophisticated works of art you can see in our cards collection. The blend of father and daughter inputs is striking and, we think, very successful.

Here's the important message for the New Year that we think we relay via these designs. Michal, as of today, has 114 friends she doesn’t know who also receive therapies through the Malki Foundation. Your partnership with us makes this possible.

These therapies - always therapies that were declined by the families' health insurer (in Israel: Kupat Holim, of which there are four) - are tremendously important as well as greatly appreciated by us and of course by the children themselves. And as we keep saying. it's a privilege for us to be able to support parents who battle against adversity to do everything they can for a loved child with extreme special needs.

As we tell you in previous years, we could not possibly achieve all that we do without the support of our donors. We feel very blessed to have them as a Malki Foundation supporter and we can’t thank you enough!

On behalf of all of us at the Malki Foundation, we wish you and yours a very happy new year full of peace, prosperity, and growth.

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