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Idan’s First Day of School – Over the Rainbow

Idan first day.Since Idan was first born, one of our nightly routines has been to sing “Somewhere Over the Rainbow.” This song took on new meaning when Idan was first diagnosed. What began as a soothing lullaby became a nightly plea. “Some days I wish upon a star, I’ll wake up where the clouds are far behind me…” building up to the crescendo, “if happy little blue birds fly beyond the rainbow, why, then oh why, can’t I?” There were nights when I couldn’t bring myself to finish the song, my voice cracking on the line “somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true.” Nights when Idan’s voice rang out loud, echoing my call for better days, yearning to soar above the rainbow after so many cloudy nights.

Today, we flew right over that rainbow, and the dreams we dared to dream really did come true.

Today, Idan had his first day of Kindergarten. Today, Idan had his first day of participating in the most normal and routine activity that all other kids his age get to experience. Idan had been very worried and afraid of this new experience. It’s no wonder, as he spent most of his life in isolation, avoiding other kids at any cost. We spent the summer getting him used to other kids and the world around him. Robofun camp, soccer, and play dates all helped, but we still were not sure he was ready. When Akiva picked him up after school today, Idan was all smiles. He had an amazing first day and enjoyed all the new activities. He was even excited to join the other kids and parents for an after school playground meet-up. It was drizzling out, and Idan definitely still has a hard time physically keeping up with kids his age on the Jungle Gym, but he did not want to leave, and stayed and played till everyone was ready to go home.

He may have landed in Oz today, way over the rainbow into Munchkin Land, but it looks like he is finally fitting in.

 

 

 

Day 365 – Happy Transplantversary to Idan!

Screen Shot 2017-07-11 at 4.04.21 PMOn this day last year, we were anxiously watching a little IV bag with donor stem cells slowly being drained, wondering if it would bring the cure we so desperately needed for our little boy. It has been quite the journey ever since. Through ups and downs, we never lose sight of how fortunate we are to have made it to each important milestone, but the one-year mark is by far the most significant. If you survive a year after a bone marrow transplant with no major complications, your chances of survival long term (absent rejection, of course) are excellent. Wishing our little Idan a very happy “Transplantversary” today, and spreading some love and joy through this video in hopes of helping other little boys with his disease reach the one-year mark with as much courage, grace, strength, and hope as Idan had during the long but incredible year.

You’ll want to watch this one with sound (please like and share!!!) 🙂 Exactly one year ago, Idan had his second bone marrow transplant to cure his Hyper IgM. Please join us in wishing Idan a very happy Transplantversary!

We are hoping to break last year’s record of over 19,000 views & nearly 600 shares in honor of Idan’s Transplantversary and in support of the Hyper IgM Foundation, which is working tirelessly to improve the lives and long term outlook of children with Hyper IgM. You can help! Like and Share this video, and please consider making a donation to the Hyper IgM Foundation on our website at www.hyperigm.org/donate, or right here on Facebook: https://goo.gl/7iTC1q. Thank you!!

Idan’s 1st Transplantversary

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It has been over four years since our son, Idan, was diagnosed with Hyper IgM Syndrome (HIGM), a rare and life-threatening immune deficiency, and an army of supporters came together to support our family as we headed into a bone marrow transplant to cure our little boy. Two transplants later and a long journey with many hospital stays, a cure appears to be within our reach. Idan is doing amazing and will be going to kindergarten this fall. In July, we will celebrate not only Idan’s fifth birthday but also his first Transplant Anniversary, or  “Transplantversary” – a great achievement for any transplant patient, but especially for Idan, given the failure of his first transplant.  Our journey is not over, but we rejoice and celebrate this milestone and give thanks to all of you who have walked this road with us. So many other children with Hyper IgM have been less fortunate, whether with transplant outcomes or without having a donor match to even journey down the road for a cure. The Hyper IgM Foundation, which we founded, is working tirelessly to support these families and to help find a cure for all children and adults living with Hyper IgM Syndrome.

13697129_1332607503435880_8894533746877192939_nLast year Idan’s army helped raise over $19,000 in support of the Foundation and the research grants we provide. The Foundation is helping to fund cutting-edge gene editing research that will hopefully provide a safe and long lasting cure for Hyper IgM Syndrome. Today, we ask you to help us bring this future closer and make a donation in honor of Idan’s One Year Transplantversary.

Our goal is to raise over $25,000 this summer in honor of Idan’s cure and in support of the Hyper IgM Foundation. This will allow the foundation to increase its research grants to the labs focused on gene therapy and accelerate a cure.

Three ways you can donate:

 

Other ways to support the cure:

Help us spread the word! Pass this email along, or share our Facebook fundraiser. Start a fundraising page through Crowdrise or Facebook and set your own goal in honor of Idan or another HIGM family.

HyperIgm

More about the Hyper IgM Foundation:

The Hyper IgM Foundation aims to improve outcomes and quality of life for Hyper IgM patients and their families through promoting and supporting research, creating and providing educational tools for the patient and physician communities, and creating a community to support Hyper IgM patients and their families as they undergo treatment and cope with this disease. Between Akiva’s extensive experience in public health, Amanda’s legal background in healthcare and nonprofit law, our fellow board member Dr. David Hagin’s cutting-edge research into gene editing for Hyper IgM, and our scientific advisory committee that consists of the foremost experts on Hyper IgM in the world, we are confident that we can make a tremendous impact.

We hope you can join us again in support of a cause that will impact the lives of many children and adults living with HIGM.

Consider a donation today!

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The Hyper IgM Foundation is a recognized 501(c)(3) charity and all donations are tax deductible. We thank you for your support and invite you to stay up-to-date on the Foundation’s efforts by connecting with us on Facebook by liking the Hyper IgM Foundation Facebook page, www.FB.com/HyperIgMFoundation, and by visiting our website, www.hyperigm.org.

As a reminder, the Hyper IgM Foundation is entirely a volunteer-run organization. We have no salaries, no rent, and limited overhead. This means that 100% of your donation goes to fulfill our mission to improve the treatment, quality of life and the long term outlook for children and adults living with Hyper IGM Syndrome through research, support, education, and advocacy.

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