Tag: Rett Syndrome

October is Rett Syndrome Awareness Month

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Once upon a time we were two pretty private individuals, only sharing the intimate details of our lives with those closest to us. However once Elle was diagnosed with Rett syndrome we realized that privacy wasn’t going to help us in our quest to raise awareness and the hope of one day finding a cure. It is for that reason that we agreed to be a part of this community magazine and share our story. Today on October 1st, the first day of Rett Syndrome Awareness month we share this story with all of you.

Thank you to Kari Raymer Bishop for helping us share our story and raise awareness.

#rettsyndrome#lightituppurple#ORSAstrong

Thank You Sacred Heart Lions!!

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We feel so blessed to be a part of such an amazing community. We were once again reminded of this during the month of October, as the students and staff of Sacred Heart School recognized Rett Syndrome Awareness Month.
 
We want to thank the Student Council for coming up with the idea of supporting Ref4Rett in the month of October. Thank you to Elle’s teacher, Miss. MacKinnon, for her leadership with the Student Council. Thank you to our principal, Ms. Mitchell, for her on-going support of Ref4Rett. A big thank you to all of the staff, the entire student body and their families, for their participation in the popcorn sales, other donations and in helping us to continue to raise awareness.
 
Our school has once again demonstrated the true definition of “Love Tenderly”.
 
Click on the link below to read the article published this week in the Brant News.
 

Ref4Rett 2016 an Amazing Success!!!

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Ref4Rett 2016 was another incredibly successful night, with a record breaking 774 people in attendance!!!! Truly amazing.

It is hard to put into words the feeling that we get when we see the Brant Sport Complex full to the brim with so many people who turned out to watch some great hockey and support Elle and Ref4Rett. We work so hard to pull this event together and when we sat in that arena on Saturday night and looked around, it left us feeling breathless and once again so proud to be a part of this community.

The 2015-2016 Ref4Rett season has raised over $25,000 all in support of Rett syndrome research and we couldn’t have done it without of the support of all of the amazing people in this community.

Thank you to Todd Wood and all of his support. The truth is that without his support we wouldn’t have the platform to even host such an event. To our sponsors: Legends Taphouse and Grill, Brantford Nissan, Canadian Home Inspection Services – Stewart MacNamara, Canadian Tire Paris, and Masonite. Thank you to Cindy Hefferan from Now & Always Special Event and Wedding Decor for donating all of the linens so that we could make the room look beautiful. Thank you to Kara Wilson from Wilson Sport Photography for capturing all of the incredible moments of the night. Thank you to the Paris Mounties Alumni and the Ayr Centennials Alumni for agreeing to give of their time and raise money to be a part of this event. To our all of our volunteers, who without, we definitely couldn’t have made the night happen! Thank you to everyone who donated an item to the silent auction or who made a monetary donation. Thank you to Molly Gibbons for her amazing performance of the national anthem. And last, but definitely not least, to all of the people who attended the event – none of our success could have been possible without your attendance.

A very special thank you Elle’s Rett sister, Isabela Campbell, and her parents Scott and Holanda, for making the long drive to Paris to share the evening with us.

Since October 26, 2012 when Elle was diagnosed, we have had to learn to live our lives with hope and faith, and the on-going expression of support really does help to fuel our hearts and gives us the strength to continue on this journey.

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Three Years Later…..

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Elle - 2015

Three years….

Some days it is hard to believe that it has only been three years since we heard those dreaded words… “Elle has tested positive for Rett syndrome” . ..yet at times, it feels like an eternity.  An eternity of uncertainty, second guessing and hoping.  Days when we feel like we understand Rett syndrome and how it impacts Elle, and other days where we feel like we are at it’s mercy having no clue about what we are doing, what is going on, who to call for help and if we are doing enough for her.   Feeling lost in the world of therapists, diagnostic testing and medical appointments, and hoping that we haven’t missed something.  Some days, despite the amazing people that we have around us, the loneliness of parenting such a special child is overwhelming.

This has been another year of ups and downs.  A year of letting down our guard to just enjoy life day to day, and then being terrified when the seizures are out of control and when her ability to walk was once again compromised during the summer.  Another year of being grateful for everything that we have, yet a times hating that our lives have been impacted by Rett syndrome.  Walking the line of self pity, but then feeling guilty for even letting our minds go there.  Raising a daughter with Rett syndrome is both a blessing and a challenge.  A challenge for the obvious reasons, and a blessing because we never knew the true depths of victory and joy until we stood witness to Elle’s persistence in overcoming those challenges.

Raising a special needs child has changed our lives. We have been challenged and pushed beyond our limits in raising Elle, but we have also grown tremendously, and developed soft hearts and empathy for others in a way that we never would have without her.  Raising Elle has shattered all of our preconceived expectations of the “should bes” – those things that we once idolized and built our lives around – and put something else at the core of our lives: love, understanding and hope.

Knowing the true potential locked within Elle and all of the other individuals living with Rett syndrome, is what continues to give us the strength and determination to continue on our journey to raise awareness and funds for on-going research.

There continues to be so much hope in the world of Rett syndrome as there are numerous research projects and clinical trials happening at independent labs and major universities thought out the world, including in Canada, and as close to home as Toronto.  All of this research is aimed at improving the day to day lives of individuals with Rett syndrome, and with ultimate hope of one day finding a cure.

As in the past three years, we continue to receive tremendous support from the Paris Mounties (OHA Jr.C).  On January 30, 2016, we will be hosting the 4th Annual Ref4Rett Event at the Brant Sports Complex in Paris.  This year’s event is set to be another great event and will feature two hockey games.  The first game will be an alumni game between the Paris Mounties Alumni and the Ayr Centennial Alumni.  The second game will be the last regular season game between the Paris Mounties and the Ayr Centennials.  Tickets to the event are $8 each and include admission to both games.  Tickets are available at the following locations: Legends Tap House & Grill 1084 Rest Acres Road, Paris, during the Paris Mounties Home Games at the Brant Sports Complex, or by emailing us at ref4rett@gmail.com.  Along with the great hockey, there will also be a silent auction.  Our goal this year is to raise $30,000.00 for the Ontario Rett Syndrome Association’s (O.R.S.A.) Hope Fund which is dedicated to Rett syndrome research.

As we plan for our event, we are currently looking for sponsors, silent auction items, or volunteers to work at the event.  If you or someone you know is interested in any of these, please contact us.  We’d also ask that any Alumni interested in playing that night, contact us for further information.

 If you are interested to learn more about our journey or to make a donation you can visit our website www.ref4rett.com and you can also like us on Facebook or follow us on Twitter.  To learn more about Rett syndrome and O.R.S.A. you can visit www.rett.ca .

Thank you for the continued support, well wishes, prayers and hope, they are all so truly appreciated.

2015 Research Grant Awarded

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We are very proud to share with you that because of the support of that we have received the Ontario Rett Syndrome Association was able to fund a $50,000 Research Grant through the Hope Fund. It was just announced and was the largest grant in the history of O.R.S.A.! It hopefully moves us one step closer to finding a cure for Rett syndrome!  Please follow this link to see the details of the grant, www.rett.ca/50000-research-grant-awarded/

3rd Annual Ref4Rett Event

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Neither of us are writers at heart, so each year when it comes time to reflect on the past year and create a post to share with all of you about the upcoming Ref4Rett season, we find ourselves stuck on what to say and how to say it. We are not looking for pity or sympathy but feel that it is important to continue to share our journey, our accomplishments and spread awareness.

Today marks the second anniversary of Elle’s diagnosis and the day that Rett syndrome became an everyday part of our vocabulary.  Our first year was about grief and loss, the second year about fear and a lot of “don’ts” and this past year has been about having Rett syndrome hit us square in the face – what it really means, the impact it can have and how each day is truly unpredictable.

This year was a year full of ups and downs.  In April, we celebrated the incredible launch of the Canadian Rett Syndrome Registry, which we are really proud to have been able to fund a large portion of the development of this Registry through all of our fundraising efforts.  We are also so thrilled that the Ontario Rett Syndrome Association (O.R.S.A.) has created the Hope Fund.   This fund exists solely for research.  One hundred percent (100%) of all of these dollars will go to Rett syndrome research to find a cure and/or treatment for Rett syndrome.  The first fifty thousand dollar grant that will be issued this year is solely possible because of the efforts of Ref4Rett and the tremendous support that we have received from everyone.

Despite all of those great celebrations, this year we also learned how truly hard it is to be a parent of a child with a syndrome that many (not even highly qualified doctors) are not really knowledgeable about or truly understand.  Throughout this past summer, we saw a glimpse of what life would be like if Elle suddenly lost the ability to walk and talk, and the terror that was in her eyes when she was going through the loss.  We learned how truly vulnerable we are and the true meaning of being helpless; when you see your daughter disappearing before your eyes and not knowing what do about it.  We also saw the extraordinary commitment of the doctors who we’ve had the honour of meeting in the Rett community who responded so quickly to our cries for help; trusting that we really do know Elle better than anyone else and who truly listened to our worries.

It has been a year, where Elle has transitioned in her appearance from being a little girl to a big girl of 7.  Being a “big girl” has brought along with it higher expectations of what is “proper” or “normal” behaviour in public.  We have started to notice more looks from those around us who do not realize that she has Rett syndrome.  She is no longer just a “cute little girl” who is just being “cute”, but a 7 year old who makes noise at times where it maybe inappropriate; drawing looks of disapproval from those who do not understand.  We as parents in turn feel the pressure of “why can’t you keep your kid quiet”; when all we really want to do is shout out “SHE HAS RETT SYNDROME AND WE ARE JUST VERY GRATEFUL THAT SHE CAN TALK”.

Despite the busyness of life, we continue to be determined to both raise awareness and funds to support on-going research.  It is for that reason that we reach out to you today.  In the last two years, Ref4Rett has raised over $100,000 in support of O.R.S.A., all of which has been dedicated to research.  Moving forward, all of the Ref4Rett funds will continue to be dedicated to research and distributed via the Hope Fund.

As in the past two years, we continue to receive tremendous support from the Paris Mounties (OHA Jr.C).  On January 31, 2015, we will be hosting the 3rd Annual Ref4Rett Event at the Brant Sports Complex in Paris.  This year’s event is set to be bigger and better and will feature two hockey games.

The first game that starts at 5:30 p.m. and will feature an alumni game between the Paris Mounties Alumni and the Toronto Maple Leafs Alumni.   For one lucky fan there will be the opportunity to coach the Leaf Alumni team through an online auction.  The highest bidder will win the opportunity to sit behind the leafs bench for the entire game and be in the dressing room with the team between periods.  Visit www.ref4rett.myevent.com and click the “Be the Leafs Coach” tab to place your bid.

The second game starts at 7:30 p.m. and will be the last regular season game between the Paris Mounties and the Ayr Centennials.

Tickets to the event are $20 each and include admission to both games.  Tickets are available at the following locations: Legends Tap House & Grill, during the Paris Mounties Home Games at the Brant Sports Complex, or by emailing us at ref4rett@gmail.com.  Along with the great hockey, there will be an autograph session with the Leafs Alumni and a silent auction.  Our goal this year is to raise $50,000.00 for Rett syndrome research.

As we plan for our event, we are currently looking for sponsors, silent auction items, or volunteers to work at the event.  If you or someone you know is interested in any of these, please contact us.

If you are interested to learn more about our journey or to make a donation you can visit our website www.ref4rett.com and you can also like us on Facebook or follow us on Twitter.  To learn more about Rett syndrome and O.R.S.A. you can visit www.rett.ca .

Thank you for the continued support, well wishes and prayers, they are all so truly appreciated.

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October is Rett Syndrome Awareness Month

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October is Rett Awareness Month across the world. Rett Syndrome (RTT) is a neurodevelopmental condition characterized by the loss of spoken language and hand use, coupled with the development of distinctive hand stereotypes. This disorder is seen in infancy and occurs almost exclusively in females. Rett syndrome is found in all racial and ethnic groups throughout the world. It affects one in every ten thousand live female births. Early developmental milestones appear normal, but between 6-18 months of age, there is a delay or regression in development, particularly affecting speech, hand skills and gait. A hallmark of Rett syndrome is repetitive hand movements that may become almost constant while awake. Other more common medical issues encountered include epileptic seizures, muscle stiffness, osteoporosis and scoliosis. Despite its multiple handicaps, Rett syndrome is not a degenerative disease. Many individuals with Rett syndrome live long into adulthood. There is currently no cure but there is significant scientific progress being made.

While Rett syndrome has only been a part of our lives for 3 years, we know only too well what an impact it has on the individuals and families who are affected. We are hoping that you can help us to continue to raise awareness and support for those individuals impacted by Rett syndrome by sharing this message with your family, friends and colleagues. By sharing this message you might help a family that is struggling to understand what is happening with their child, or help the individual who stares at the little girl in church who has Rett syndrome and for the most part unable to control her actions but is so excited to be there that she is at times loud and disruptive. Sharing this message might trigger someone to make a donation to the Ontario Rett Syndrome Association; a volunteer organization that is trying to make a difference by providing funds for regional Rett Clinics, provides support for those impacted by Rett syndrome and advocates for Rett syndrome.

In recognition of Rett Awareness Month, Ref4Rett will continue to sell purple skate lace bracelets for $5.00. Wear the bracelet and help raise awareness – we guarantee that people will ask you about the significance of it!

If you are interested in purchasing a bracelet, contact us and we can make arrangements to get it to you.

~Keep Calm and Cure Rett~

Elle 2014 photo shoot

 

Thanks to Melanie Murray at BoXphotography for the great photo!!! Always so much fun working with Melanie – she just knows how to capture the special moments. www.boxphotography.ca

We ‘R’ Family – Rett Syndrome Conference 2014

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What an amazing weekend!  We spent the entire weekend at the We ‘R’ Family Conference in Hamilton hosted by the Ontario Rett Synrome Association (O.R.S.A.).  As parents of a daughter with Rett Sydrome, we must say that attending our first conference was very exciting and informative.  It is difficult to decide what information had most impact for us, as there was just so much!

We were able to meet other families from all over the country who are also raising daughters with Rett Syndrome.  It was a nice feeling to talk to others and realize that we are not alone in this journey.  We realized that not only do we have the support of so many others, but we can also provide support to other families – WE truly R a FAMILY!

Throughout the weekend, we listened to some great presentations from some unbelievable individuals from the medical field, scientists and an assistive technology specialist.  It was easy to see that these individuals are clearly very committed to and passionate about Rett Syndrome.  This was evident not only in their presentations but also in their availability to families over the weekend.  At one point in time, we had an ad hoc discussion with the 3 doctors from each of the Rett clinics in Ontario regarding a question that we had about Elle –where else does that happen??

We learned that there is currently a ton of research, animal testing and even a couple of clinical trials (in the USA) underway. It was great to get a better understanding of what this means for us and why they are concurrently testing various methods to improve the lives of those impacted by Rett Syndrome including the possibility of reversal of symptoms. 

We were also provided some great information about how to deal with the day-to-day lives of these individuals; from approaches to treatments, the development of a complex care plan and even strategies to engage children and adults in conversations and achieving literacy results!  Many of which we plan on implementing.

Elle was able to join us Saturday night for the dinner celebration.  Elle enjoyed seeing her Rett sisters as well as all of the doctors who she loves all so much.  The highlight of Elle’s night was meeting CHCH Morning Live Co-Host, Annette Hamm, who was the MC for the night.  Unlike many other children Elle’s age, Elle LOVES the news (if we are home, the news must be on) and was incredibly ‘star-struck’, asking several times “Annette come to Elle’s house?”

One of the highlights of the weekend for us was the launch of the Canadian Rett Syndrome Registry.  This is where all of the money that we have raised through Ref4Rett over the last two seasons has been allocated.  The registry is a CRITICAL step that will organize the Canadian Rett Syndrome population to attract more research opportunities to Canada with a special focus on clinical trails of potential new treatments.  It was an overwhelming feeling to know that with all the support that we have received from so many people that Ref4Rett has been a key financial contributor to the launch of the Registry – Thanks again to each and every person who has supported us!  Our hope from the start has been that the Registry will make a drastic difference both in Elle’s life, and in the lives of everyone in Canada impacted by Rett Syndrome.

**If you know anyone in Canada living with Rett Syndrome, we strongly encourage you to register at http://www.rett.ca/registry/.   Please share this will everyone you know, as this is the next step in making a difference!**

We left the conference having made some new friends, connecting with old friends and having made some great contacts in the medical/research field.  The weekend helped to reinforce our great sense of hope that we can, and are, making a difference in Elle’s life both now and for the future, and have already started the planning process for the next Ref4Rett season.

Keep Calm and Cure Rett!

 

**We were completely unprepared with a dead battery in our camera, so we’ve taken a few pictures from the O.R.S.A. site to share**

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The Canadian Rett Syndrome is officially open!

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Beautiful Angels!

 

 

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The Morton Family getting ready for dinner.