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A journey with Ella
We would love to hear from you.
Will you leave us a note? (use the comments area below. You have to scroll way down to the bottom of the screen…)
i taught laurel wong in Middle school… you have a real treasure there. good luck in what ur doing. xxx
dennis potter
Way to go Ella! We follow your story and are so proud of all of your accomplishments! love, sunshine mom to Jayna, Rt HME, Functional Hemispherectomy at 28 days old
Hi Ella, Now that the school year has begun, I have been thinking of you and hope that you and your family are doing well. I love the video of you as a flower girl at Bethh’s wedding! I miss seeing you at school everyday, and I hope you are having fun in your new class. Keep in touch 🙂 -Amy
Just to say Hi. Many hugs from the Knijniks.
I have a niece who was just diagnosed (at 3 days old). Your site was so encouraging and gave the easiest to understand information. Can’t wait to share it with my family. My prayers are with you and your sweet family.
To Etan, Michelle, Gaul, Ella and Netta – Shalom from Ramat Gan! I just checked in to see Ella’s progress. I was happy to see Ella reading, learning, hiking, laughing and skiing! And it is great to see Ella with her little sister Netta – another survior; another miracle-kid; another proof of the power of love and hope. Keep it up, Rozins! All the best to all of you from me, Nili
Michelle and Etan I got to this site by chance through on of my client’s sites. I was moved by the challange and the courage to present what is happening as a way to cope. All the best Gil
Etan and Michelle It was such heart warming to see the recent short video of Ella walking on theis Ella’s log. Amazing progress. Regards from California- Aviva and Aharon
Hi Michelle and Etan, We have Eva, a 2 yrd old with M-CMTC. She has hemihypertrophy and hemimegalencephaly as a result amongst other things. I was just checking in to see how everyone is doing. Ella is looking fabulous. I love the way her vocabulary is growing strong, it gives me hope. You can visit us at http://barhambunch.blogspot.com Many wishes, Callista
happy new year, lots of love, orly
Shanna Tova Ella, Netta, Gaul, Michelle and Etan, I loved all the firsts in Ella’s recent log. May the new year bring more of these happy firsts and much deserved squirts of happiness and encouragement to all of you. Yifat
hi Ella! how is it going with your family? are you excited to be in first grade? i like your website. i think its pretty g reat. love, your friend Marianne
Hi Michelle and Etan, I had the pleasure of skiing with Ella two sundays ago. Ella had so much spirit and stamina, she amazed me! she loved the magic carpet; she could do it herself with very little support. I know she enjoyed going down the hill between my legs because she would give me the “high five” to do it again! Ella would be an excellent candidate for “the slider” if she goes skiing again. The slider is a walker with skiis attached. The student (on skiis also) leans onto arm rests and the instructor can control speed with tethers attached the the slider. It is great because the child can ski with some independence. Meanwhile, please give Ella a hug for me and big “high five”! Hope to see you all again! Lisa.
Hello, My son, Nicholas, is 9 years old and had a hemispherectomy (due to HME) when he was 9 weeks old. He is doing very well now. We are part of the Yahoo group Jill mentioned. I have a photo album of his pictures on that site. I commend you for putting together this great page for your beautiful daughter and for others to find valuable info. concerning HME. Best wishes, Kelli
Etan, From a casual ‘how are you doing’, after not being in contact for so many years, I was surprised to receive the link to Ella’s site. I am impressed of how you are dealing with Ella’s condition. Shall you and Michelle be blessed with all the strength needed. Ella is a lucky girl. Dorit
Hi, I recently lost my 2 year old son to HME. I belong to a group which I just linked you to. I see Ella is progressing beautifully. I was hoping you could come join us to give some success stories to our group! I noticed the Australia and Scotland groups are gone. The Yahoo group is the only one left. Please come check it out and join up for free! http://groups.yahoo.com/group/hemimegalencephaly/ I know there a lot of people over there that need to see some success
Hi I am in desperate need of help concerning my son CJ. He is 17 months old and had a hemispherectomy from Hemimegalencephaly in March of this year. I am in uncharted territory and need help through all of this. Yours is the only current website on this issue I would love to speak with you please e-mail me so we can speak. Thanks Signed Desperate HME Mom
Hi its me dani, i looked over this site you made about ella and I was very interested. I am glad that you are keeping updates on how ella is doing. I hope to check out this site and see how ella is progressing every month prior to when we see you. Dani Portman
Hi Ella! Congratulations on your award! You look so grown up in the picture. I miss you! Bethh
Hi Etan and Michelle, From time to time I like to check in to see how Ella is doing–she is a real cutie and it is gratifying to watch her progress in so many wonderful ways ! The walking video shows me how determined and spunky she is. Congratulations on her Mason-Rice award and I would really love to meet her one of these days. Take care, Miriam
Thanks for bringing Ella to the gym today! Seemed like she had fun. 🙂 Come again! I saw your web page for the first time tonight and really enjoyed your pictures and sense of humor. Thanks for sharing all this with us!
We’ve just been visiting with you via your photo album and log. So nice to see you all! Good to hear about your travels and Ella’s and Netta’s progress. We love you. Uncle Mark and Aunt Jan
I have a daughter who is 2 weeks old and has been diagnosed with hemimegalencephaly. Her seizures are not controlled by meds and she is a candidate for early surgery. My heart hurts for your Ella, as well as our Jayna. Thank you for posting such helpful information.
Just visiting your site and wanted to say thank you for keeping it updated. Our daughter Lauryn has left HME and a left hemispherectomy and we are almost 1 year seizure free. Lauryn is 18 months and is now rolling over and saying consanants which we are so happy about. I was so happy to see the video of Ella walking. Thanks again for the encouragement!!
Hi Michelle. I am sorry to hear that Ella had to have yet another surgery. She is such a strong little sweet girl. Reminds so very much of Kody. I read your log and if you didn’t mention the name I would think your talking about Kody in everything you say. Except Kody is not walking yet but we are hoping after his double hip surgery and heel cord lengthening that he will start to want to stand up like he used to. I am glad to see that Ella is doing so well. I like to read your log because I identify so closely with it. (Most do not understand) I will come and check back on Ella soon. Randi (Kody’s grandma) http://www.caringbridge.org/pa/kodyc