Comments on: Averi’s story ~

By: LeAnn

LeAnn — Sun, 02 Jul 2017 02:26:19 +0000

In reply to Lesley Poe. Hi Lesley, Thank you so much for your comment. I am very sad for your lost. I can't imagine the pain on that one. We nearly lost our Averi several times over a 5 month period of time. Averi is now 13 years old and is doing well physically. She is blind with a touch of peripheral vision. She is Autistic and is a Savant. She is really good with dates, numbers and music. Her communication skills are improving. We are very grateful for her and have learned many things through her disabilities. It has been a long road for her parents. I will send you their contact information and I know my daughter in law would love to communicate with you. Sending loving thoughts your way! LeAnn

By: Lesley Poe

Lesley Poe — Wed, 28 Jun 2017 20:30:44 +0000

I am a mother of a beautiful little girl who I lost at the age of 3 1/2 in 2001. She was dx with Osteopetrosis in 1999. Her disease process took a much different course than Averi’s. I saw your story on MD and I knew I just had to reach out.

By: camille

camille — Tue, 31 Jan 2017 05:47:53 +0000

Thank You Jesus! God really did a miricle and thank you for sharing. that is faith that you guys showed!prais the lord.

By: Tiffiny A.

Tiffiny A. — Sat, 30 Jun 2012 18:28:32 +0000

I just saw the episode about Averi on Mystery Diagnosis and missed the ending. I googled it and found your blog. Thank you for sharing your story, it was beautifully written and brought me to tears. I am so happy to hear Averi and her family are doing well and the picture shows what a beautiful girl she is! Thank goodness you didn’t listen to the doctor who misdiagnosed Averi with severe brain damage. God did see you through! It certainly has given me a wake up call when we all can get caught up in the trials of day to day life. It takes a story like this to make those trials just that trivial Your daughter, son in law, Averi, Averi’s two older siblings and all of your family have been through been a horrible ordeal but your faith saw you through and by sharing your story you give others hope, knowledge and the importance of bone marrow donation! Best of luck!
Tiffiny

By: Crying babies and Autism « secretaspie

Crying babies and Autism « secretaspie — Tue, 18 Oct 2011 14:47:33 +0000

[…] This little girl has a tragic condition. She cried a lot after birth due to severe pain and was diagnosed with Infantile Osteoporosis at 15 weeks. […]

By: handsfullmom

handsfullmom — Sun, 16 Oct 2011 01:57:09 +0000

Thank you for sharing your beautiful story. I was touched at how both Grandmas stepped in to really help out at a tough time — thanks for being a great example of family!