No ordinary girl

I’ve started this post so many times, but I always come back to the same thing.

You can only be described as exceptional when you spend every second of every day proving every one wrong.

That is what these wonder women have been doing for at least 21 years (in one case 58 years).

Sherry Greenoe is 58
Sherry (58)

I can’t tell you what it has meant for them; I no longer dare to think I can understand what goes through the minds of people afflicted by Rett syndrome. My hope is that one day they will tell you themselves.

But why do I have this hope?

My journey can only be described as a journey of enlightenment.

50 years ago, in 1966, Andreas Rett first published the first description of Rett syndrome. It only was generally recognised in 1983, when a second article was published by Swedish researcher Dr. Bengt Hagberg.

It means that Sherry (58 years old) had already been living with an undiagnosed disorder for 8 years, Nola for 2 and Kristi was 1 the year Rett was officially identified.

These girls (and their parents) were given an incredibly bleak life expectancy, but this is a story of hope, one where we prove the world wrong. That is exactly what these women proceeded to do, to reset our understanding of Rett syndrome.

In 1999 MECP2, the causative gene responsible for Rett syndrome, was discovered by Huda Zoghbi and her team. Which means all of these women have had Rett syndrome longer than we have known the cause of it.

Every single one of these women has lived through discovery that it could be reversed. This was proven by Sir Adrian Bird in 2007.

These facts are huge, because it means that all of them were alive when we didn’t know what caused it or had an inkling of how to cure it. Yet they, and their families (there is no amount of acknowledgement I can provide here, these families are amazing) persevered and fought through it all.

Jolene
Jolene (33)

Our discoveries about Rett syndrome have increased massively; currently there are more than 10 drugs in testing (some in final stages), which will help alleviate many of the symptoms in Rett syndrome.

In the last few years, we have made technological breakthroughs, which have enabled people with Rett syndrome around the world to start communicating unassisted. Devices like this are giving us a window into Rett, which was previously unaccessible.

That window is proving something else to us. Once again they are smashing the preconceptions around the ability and intelligence of people who suffer from the disorder.

These women are smarter than we ever guessed and more able than we have given them credit for.

At the heart of these discoveries are the women and families (who without the help of social media) managed to overcome the most incredible obstacles, and be fitting examples of what happens when you don’t presume some form of competence. The people who founded the charities, the lifelines, the social groups, which have made our journeys easier.

Yes, what we know has changed, it has changed enormously. It has changed because of these people. Rett syndrome is a better diagnosis today than it was 50 years ago because of these people.

These women who have changed the world, by beating it, every second of every day. If that is not a story of hope, then I don’t know any.

Christopher Reeve said

“I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”

Whilst this quote is true for the families who spend countless hours at appointments, in hospitals, at therapy, fighting insurance companies and institutions, raising money to fix it and raising awareness to fight it, it’s not true for the people afflicted by it: my every day heroes. Because it takes something exceptional to fight every second, of every day, for a lifetime. They give me hope.

However, nothing about Rett syndrome is ordinary and these are no ordinary girls.

————-

This Album and poster(Which can be found here) currently has 107 women (A couple of young ladies are on the verge of 21, so I’ve included them).

58 Sherry
52 Nola
51 Kristi
47 Ann
43 Tabitha
42 Jennie
41 Kathy-Jo
40 Kris
40 Ciara
39 Amanda
38 Shelly
37 Heather
36 Nicole
36 Laurissa
35 Tala
35 Shana
35 Renee
35 Lisa
34 Shelly
34 Samantha
34 Kelly
34 Brandy
33 Rachel
33 Megan
33 Jolene
33 Emma
33 Courtney
33 Brandy
33 Annie
32 Trudie
32 Teshina
32 Pauline
32 Kacie
32 Gemma
32 Deirdre
32 Charity
31 Kimberly
31 Chelsea
30 Allison
29 Charlotte
29 Ashley
29 Amanda
28 Stephanie
28 Siera
28 Laura
28 Keisha
28 Crystal
28 Amanda
27 Stephanie
27 Ashley
27 Akasha
26 Shelby
26 Sarah
26 Kirsty
26 Katie
26 Jessica
26 Jenna
26 Jasmine
26 Chelsie
26 Caryn
25 Silvia
25 Rebecca
25 Nikole
25 Khrista
25 Erica
25 Chelsea
24 Sabrina
24 Renée
24 Rebecca
24 Kelsey
24 Jessie
24 Hillaree
24 Emily
24 Breezy
24 Angela
24 Amy
23 Taylor
23 Sydney
23 Sarah
23 Raquelle
23 Rachel
23 Lyndsay
23 Katelin
23 Kassandra
23 Emily
23 Alyssa
22 Stephanie
22 Natasha
22 Daniela
22 Chelsey
22 Alianna
21 Vivienne
21 Stephanie
21 Megan
21 McKenna
21 Laurie
21 Kayla
21 Katelyn
21 Kate
21 Grace
21 Brooke
21 Amber
21 Alexandria
20 Laura
20 Samantha

No ordinary girl

14 thoughts on “No ordinary girl

  1. Thank you for posting this blog.

    Our daughter Isabelle is 11 years old and she has Rett Syndrome. She is mute, fed through a feeding tube, and bound to a wheelchair. She is also a wonderful person, who loves to be read to at night, and has a belly laugh that fills the room with light and fun and love and hope.

    NOTE:
    I posted because I love the blog entry, but I also want to spread the word about something else. My wife and I run a non-profit organization in Utah, utahkidsfoundation.com, to provide resources, support and caring to the parents of special needs children. My wife was inspired to start the organization when we discovered that we ourselves were the parents of special needs children, and the process of getting help and information and resources was tedious. We wanted to spare others some of the “pain” of having to research and re-discover the knowledge many of us already possessed.

  2. Debi says:

    Nice my girl is 10 next month I have never doubted her intelligence. She is amazing and she fights every day ❤️ Love and respect to all the girls and roll on our cure to bring our children back to let them say and do all the things they have only ever watched

  3. Nadine Booth says:

    Love this blog, my dauthter Kimberly is 41. She developed Retts when she was around the age 26 months, however we did not know until she was 21 what was wrong. She has a strong spirit and so much love to give. We so grateful for her, she is able to walk, hold a cup. She lets us know what she wants in many ways, Kimberly does not speak, she lost her speech at 26 months at times she has said a few words, but for now she is not speaking. Thank you again for this.

  4. Dana Sutton says:

    Thank you for the tribute to our older ladies!! We are so blessed to have social media now, with all the support and information at our fingertips. I am so happy for the younger girls and their families growing up in this world!! I remember when there was no computer, no support group, no knowledge of Rett within the medical community, and not an inkling of how to deal with it at school. But like you said, we forge our way through, ignorantly- but we made it! Sometimes I think the lack of info, and the trial and error of life- helped in more ways than we could have imagined!!

    I remember a little booklet that came out YEARS ago, it was all about little suggestions to help make life easier with Rett- from tried and true personal test. I was sooo excited about that little book!! I know a lot of the older moms will remember this!! I believe I still have that book, and several old newsletters!! Our daughter Charity, now 32, was diagnosed in 1989, she was 5. It was back in the day diagnoses were made based on medical history only. It took Doctor Percy no time to diagnose Charity.

    Before long we added the internet, social media, more groups, more doctors, finding the genetic marker and testing positive for Rett, better options for school, but best of all- realized that all along the way we believed in our girls. Yes, they are in there, a little aged, a little slower physically, a little stiffer, but still they have delight in their eyes that speak of enjoying a life full of love, laughter, sometimes pain, but always hope.

    Thanks Duncan for your tribute to them!!

  5. Pat Stander, Kristi's mom says:

    Thank you for you tribute to our older rett angels. It seems many times they have been forgotten. But I remember the years of Kristi’s diagnosis of “retarded with a severe seizure disorder. I remember my Joy when Dr. Eiben returned from Europe. He called and said “I know what it is, it’s rett syndrome.” H e told me someday there would be a test to prove it but until then we would just have to trust him, and trust him I did. God gave me Kristi because she loves me unconditionally. What a blessing that has been for me and everyone connected to Kristi.

  6. Bettye Jackson says:

    Very interesting blog. The lady Sherry is my cousins daughter. Oh I pray her parents live long enough to see her get better.
    Sherry is loved by so many people.

  7. Yvonne Milne says:

    My daughter was one of the first girls in the UK to have the diagnosis in 1985, which led to me starting the charity which is now called Rett UK. She is now 36, living a good quality of life, but with very complex health needs. Sadly she can no longer weight-bear. As our beautiful Rett people age we need more guidance on how best to treat the health issues that arise with ageing.I am hoping that in the future there will be a greater focus on this. Although life expectancy is increasing all the time for Rett people I see that one of the major causes of death is pneumonia. Respiratory problems have been and still are a major issue for our daughter but as others have said, you muddle through to find the best preventative treatments.

  8. Linda Urzi says:

    Our daughter Lindsey is 30. She was diagnosed at 28 months. This started my search for other girls and led me to a group of 3 other mothers. I am so thankful for the early support I found from them. It’s been a journey of love, heartache, friendship and learning. I was fortunate to be a state rep for IRSA and host many gatherings, attend many conferences and had the pleasure of meeting and speaking with Dr. Andres Rett and IRSA’s Kathy Hunter. It’s amazing how far the research has brought us. How wonderful it will be to see a cure in the near future. Thank you to ALL that have been there for Lindsey, our beautiful angel

  9. Collette says:

    Lovely to read about this, the same story as mine. Ciara is now 40 and was diagnosed at 12 years old . Up until then it was autism that was thought. She is very clever and still walks and uses an eye gaze to communicate. I love reading about older girls and what they are doing

  10. Susan Smedley says:

    Kelly is 35 now… she was diagnosed at age 8 by observation only no real information and a life expectancy of maybe 14 !!! so a big finger gesture there lol …She spoke a little up to the age of 2 and tried to walk but got no further than weight bearing she began regressing shortly afterwards sceaming episodes got worse and headbanging and biting followed …would I change anything ? I assume I’m supposed to say NO but thats so not right… I dam well would change Kelly’s whole life. . free her from the Rett monsters clutches and let her live her life instead of existing she’s sad and that cuts like a knife …so do I hate Retts ? yes I do xx

  11. Beulah Oelke says:

    This work of love by Duncan Millar is beyond words for me.
    We adopted our Nola, when she was an infant..she was a precious happy baby, until Rett stole her away. We had no idea in 1967 what we were dealing with, by the advice of all professionals we were advised to place her in a residential center for “retarded” people..which we did when she was about 7. We felt there was no hope, and there were not community programs, etc to help us help her. She has lived in that residential home for years, we did not have a diagnosis until she was well into her 20’s. About two years ago after much soul searching and investigating, we moved her to a community group home..she has 3 roommates, her own bedroom, they are like a family and treat each other as such…she is much closer to home so we can see her more often and bring her home as often as we can, the staff will do this also if we ask. She is very happy, contented and has shown signs of increased awareness and acknowledges more …the staff that work with her talk to her with much respect and give her opportunities she never had before. We will always regret that we did not keep her at home, and surely would have if we had listened to our hearts and not the “professionals”. I am sure they had no idea about Rett at the time either.. We are so thankful to the people who are working so diligently for a cure and for Duncan Miller and others who bring our girls to the forefront and offer us all hope. Thank you again.

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