Wednesday, February 7, 2018

Spotlight Series: Rett Boys!

We are so excited to continue to highlight an extremely important group of people in our Rett family, our Rett BOYS!  Read on to hear Maja and her son Tobia's journey with Rett Syndrome from Denmark!  


What is one piece of advice you would give to a rett mom who is struggling?
I think we all struggle on/off because Rett does that to you. The feeling of being utterly lost as a parent of a Rett boy comes and goes, and I think it’s very important to know that it is perfectly okay to struggle. Just breathe and feel all the feelings running through your heart. 

What would you tell a newly diagnosed family? 
My boy Tobias, who is turning 11 in March, got his diagnosis last year so I still am not even sure what to tell myself. I’m the kind of person who went online and looked at all articles regarding Rett. I broke down and cried for days. Much of the information you find out on the web about boys with Rett is very doom and gloom. I think it’s because it’s a very small community and there’s not enough organizations out there talking or sharing about our boys with Rett. I read early on that “most boys with Rett live a very short life.” I highly recommend to not give into that or believe it. The most important is to get out there and learn everything you can and care for your son the best way you can and know how to. It’s important to know too that it is perfectly fine to feel some anxiety about the future. You can’t let those feelings take over though. We have to understand that every child with Rett is different, unique in his or her own way and it’s important to know you’re not alone. Our Tobias has brought our entire family unbelievable joy and it’s our job, our duty to care for him the best way we can and that starts with getting quality education about how to help care for him. 

How is Rett syndrome different in boys than girls? 
This is a very difficult question to answer without sounding as if we are competing with which gender suffers the most but I can share that what I’ve learned is often the boys are much more medically fragile than girls, not in every case though. Since girls are borh with two X-chromosomes, it’s possible that 50% of their cells are impacted whereas boys only have one X-chromosome, so typically their cells are impacted at 100% but then there are the mosaic Rett mutations.

What is your Rett boy’s favorite activity? 
Tobias is a big fan of cartoons such as Kung Fu Panda, Happy Feet, Madagascar, etc. He wants his cartoons to be a bit wild and not too baby-like. I know he feels safe and at ease when he watches TV, but I do admit, I wish we could focus on some other activities besides television. He also loves to eat but who doesn’t? Ha Ha! 

 

What has been your biggest struggle so far? 
Our biggest struggle I think has been ensuring he receives the care he deserves. We live in Denmark and I know that from the viewpoint of the world we may appear to be privileged when it comes to healthcare in comparison to other countries with such things as hospital visits, medication, therapy expenses, etc. but since Tobias just received the Rett diagnosis last year, we have really had to fight the system to make them understand my boy and his needs. Another major struggle is a mix of many things. The other is that Tobias is not very social and does not care to be in large crowds or where there are many people gathered. He can become physically sick if I take him somewhere he hasn’t been before, so our world is very small and frankly, it can become quite lonely - especially since I’m a single mother. 

What has brought you the most joy? 
Tobias’ smile is incredible. He brings us so much joy. There are so many things that Rett Syndrome has robbed Tobias of but I must admit that I do try to focus on the good things. Like how he uses his eyes to communicate with us and can suddenly laugh out loud. To hear him laugh puts a smile on my face every single time.

How do you continue to make time for yourself? 
Time for myself? What is that? Ha Ha! As a single mother to a son with Rett, I must say I don’t have a lot of time for myself. Tobias usually spends once a week at my parent’s place and that’s the time I use to unplug a little. It’s not a lot but does give me a bit of time to recharge and regroup where I need to.

What do your Rett boys goals look like?
I like to just focus on the present but of course there are things I really want for Tobias. So I try with ‘smaller’ goals. The last one I had was to get him to work on sleeping in his own bed and it happened! He recently has improved in some fine motor skill with holding his fork when he eats, something we’ve been working on and now we’ll keep building upon. A larger goal we have is to create more awareness about Rett Syndrome and what boys with Rett go through. Maybe we’ll end up finding others out there that need more information or education and I can help encourage them along the way. This year I plan to host an event to support Rett Syndrome research in Denmark. I want the world to know all about my wonderful son and the incredible possibilities for an amazing future we have hope for! 
The miles may separate us, we may have boys or girls, we struggle with health concerns, physical issues, educational problems or maybe even all of the above, we have differences for sure but one thing that brought us all together is Rett Syndrome.  Someone one said that this is the best club you never wanted to join and we would agree.  Thank you Maja for sharing Tobias with us!









Wednesday, January 10, 2018

Spotlight Series: Rett Boys!


We are so excited to highlight an extremely important group of people in our Rett family, our Rett BOYS. Rett Syndrome is well known as a disease that affects mainly girls, but we have some strong fighters among us and we think they and their family deserve to be heard. For the next several months we’ll be highlighting these one in a million Rett Boys, sharing their stories and how we are all working hard to come together on behalf of all of our kiddos across our communities.
Jen Ballard is mom to son AJ and is the newest member of our GP2C Power Team! Jen shares with us a bit about their journey with Rett Syndrome and their strong fighter AJ.

What is one piece of advice you would give to a Rett mom who is struggling?  
Don't give up. It's not going to be easy, but whatever you do, don't give up. At times, it seems impossible, and lonely, but your child knows what’s happening and I believe they know you are trying and doing the best that you can. Try not to compare your situation with another. Every child will have similarities, however, there are many that have differences too.
What would you tell a newly diagnosed family? 
Don't jump on the internet and start researching right away. I did that, and it was the worst thing I could of ever done. Start local and then branch out. Look for support groups but be cautious. Most of the times, they are very helpful, however, I feel that sometimes, they can be depressing too. And the big thing, don't change your expectations for your child. Treat them and get them involved in organizations and programs just as you would a child without Rett.

How is Rett Syndrome different in boys than girls?
This is a hard question to answer because all the boys I have met along the way are so diverse. Some similarities are that the boys have seizures and breathing issues. Some differences are that I have seen is that the boys don't always have the hand wringing that the girls have. They also seem to regress a lot faster. My son started showing signs that something was wrong around 3-4 months and at a year we almost lost him. He had a tracheostomy and a feeding tube inserted, and I truly believe that this intervention saved him. However, we didn't start seeing seizure activity until he was about a year and half. That's when we had the epileptic genetic panel done and found out about the MeCP2 male deletion. The biggest difference between boys and girls with Rett Syndrome that I have seen is that most boys do not have a deletion of the X chromosome (like my son has) ... they usually have a duplication, triplication or even a quadruplication which means that there are extra sections added on to the MeCP2 part of the chromosome. And according to research, most boys who have this don't make it out of utero, or they pass within 18 months-2 years ... so every boy that is older is a miracle. 

 
What is your Rett Boys favorite activity? AJ loves music! Music therapy is his favorite thing to do. We are working with him with switches because he has some mobility in his right arm and we have some switch adapted toys we work with as well. He also loves the water. 

What has been your biggest struggle so far? 
Finding support. It’s been very challenging to find others that "get" us. We have found some other families in the same boat, but we are spread out around the country and the world. Trying to get involved with medical trials Is difficult as well. The life expectancy of boys is short and sometimes I feel like we are just treating the symptoms and just passing time until the inevitable day. We need to bring more awareness in general about Rett Syndrome and help others understand that our incredible boys are impacted as well. 

What has brought you the most joy?
AJ’s smile and the way his sister interacts and cares for him. It is truly a bond that is so beautiful to experience. The love they have for each other is incredible. 

How do you continue to make time for yourself?
This is a tough question to answer. The last time I took time for myself was when I went for a massage and pedicure back in June. And before that, it was about a year ago. I took a day got out. Between appointments, work, taking care of AJ and his sister, there has not been a lot of me time. 


What do your Rett Boys goals look like? 
For doctors to test for this sooner and make this test a part of the newborn screening for boys and girls and to bring boys out of the shadows and give them a fighting chance and a stronger voice.

Special thanks to Jen and her family for sharing your insight and perspective. If you are the parent of a Rett Boy, we want you to know that you are NOT alone. We see you and we want to hear from you. Contact Kristin at Kristin@gp2c.org to learn more about the family support available for you and your family at GP2C. Together, we are making impact for our kiddos both for today and tomorrow.

Tuesday, November 28, 2017

2017 Holiday Gift Guide!

2017 Holiday Gift Guide!

This is our 9th Annual Holiday Gift Guide!!  We have so many exciting gift ideas for your special Rett child!  We have covered every age, ability and BUDGET!  Find direct links to all of these gifts by searching these products on RettGirl.org! Check it out, let us know what you think and ADD your ideas in the comments!  

1. Beamz:
 The gift of music! Beamz Home is universally designed so that anyone, regardless of age or ability level, can actively participate in making music.
2. Chooseit! Maker 3: 
Create, edit and play personalized learning materials in the home or the classroom! 







3. Custom horse riding helmet: 
For our girls who are doing therapeutic horseback riding this is a great gift! Choose your barn colors or just pick your favorites.
4.  Sweat pants with feet:
Super cozy, ultra plush, sherpa fabric lined feet to create the ultimate sweatpants that you'll never want to take off. 


5. North Face Pancho:
The North Face Girls Oso Poncho is perfect whenever the cold winds blow.  Made out of a super smooth, incredibly warm, silky fleece that's so cozy you'll have a hard time taking it off her.  
Give Back! 
Choose Girl Power 2 Cure as your charity and a portion of your purchase will be donated to GP2C! Click Here.
 
6. Mermaid Blanket:
Keep your Rett child warm, cozy and CUTE!  With this knitted mermaid blanket.  Lots of colors to choose from!  


7. Aquapod:
This movable lagoon is like an ocean or pool only better, because it can be placed anywhere in your backyard. Your Rett child can, roll, lie, sit, make waves, chase the fish, and just giggle. Crafted of sturdy vinyl, it includes 12 colorful “large” fish inside but you can add extra!
 
8. Munch mits
 For our younger Rett kiddos that have a tendency to hand mouth this is a great solution! The Munch Mitt prevents the constant dropping of teething toys and protects the hands from irritation due to chewing.   Designed for up to 12 months old.
9.  Echo Show: 
Echo Show brings you everything you love about Alexa, but now she can show you things. Watch video flash briefings, Amazon Video content, see music lyrics, security cameras, photos, weather forecasts, to-do and shopping lists, and more, All hands-free!  For your Rett child to really get into the action program her AAC device so she can take control!


10.  Princess Canopy: 
This decorative canopy envelops kids in an imaginary world of enchantment. Hang it from the ceiling over a play space or a twin-size bed, or suspend it from a tree limb for outdoor play. The Hideaway features fluttering ribbons attached to a large, colorful flower canopy and nylon tie-backs.


11. moon in my room:  
Enjoy the shining beauty of the moon right at home with Moon in My Room. This realistic moon model hangs on your wall and lights up to show the different phases of the moon. It lets your Rett child experience the awe-inspiring sight of our moon at any time. 


 12. Soap on a rope: 
fabulously fragrant, creamy, and kind to your skin! Your Rett Girl will love being pampered by this set of two heart shaped soaps on a cotton rope.

Check out our past Holiday gift guides in our past RettGirl! Magazines HEREAnd flip through our current Holiday Magazine below!


13. Crotcheed Princess Dress Blanket: 
 Adorable princess dress blanket. Features holes to slip your arms through so it looks like you're wearing a princess dress while keeping warm.
  
14. Fairy Wings Lounge Pillow: 
Who needs a wand? Anyone who curls up in this cuddly, comfy, whisper-soft, shaped pillow automatically becomes a fairy—complete with wings  
15.  Chilly Cheeks
It’s easy to enjoy all your outdoor activities with a Chilly Cheeks Seat. Simply freeze or microwave your flexible, non-toxic gel pack and go. This seat cover cools when it’s hot and warms when it’s not. 


16. WeatherBreaker Canopy: 
this canopy attaches to wheelchairs to protect you from the sun and rain. It's great for getting to and from therapy, daily errands, waiting at the bus stop ... whenever you need it!



17.  Dance and Move BeatBo: 
Get the dance party started by pressing BeatBo's tummy or any of the buttons on his feet to activate fun songs, learning content and dance moves. Record a phrase, and he'll remix it into his favorite song. And through all the play, BeatBo introduces letters, colors, counting, music, cause & effect and much more. 


18.  DreamTents: 
Fun pop up tents that give your Rett child their own private world at night.  There’s an under the sea world, a fairy tale forest, a winter wonderland, a space adventure and many more!  DreamTents make bedtime fun!    
19.  Curved Platform Swing
This curved platform swing supports up to four kids. Sit, stand, or lie on the comfy fabric mat and enjoy the ride!

20. Hugibo
 this in not your average beanbag!  Hugibo is the perfect pillow companion for reading, relaxing, or just snuggling.  He will wrap his arms right around your Rett child and if all the hugs get him a little dirty, no worries, just zip off his outer cover and throw it right in the washing machine.  








Monday, November 6, 2017

Spotlight Series: Jenna

Meet Jenna, she has a contagious smile and has taught everyone around her the importance of enjoying the little things in life.  

What is one piece of advice you would give to a Rett mom whose struggling?  
Reach out to other Rett parents to talk with and share. It helps so much to just know you are not alone. If you have family and friends who can help, let them. Remember to take care of yourself and make sure you make time for yourself. You have to be healthy and strong in order to care of others.  

What would you tell a newly diagnosed family?  
I would recommend a newly diagnosed family to find a support group or somewhere else online to connectConnecting with local families who know exactly what you are going through is priceless. Get involved with Girl Power 2 Cure and leverage their resources at Rettgirl.org, Rett University and via the Rett Girl Magazine. There’s lots of great new information coming out all the time and staying on top of really helps with coping with it all. 

What is your Rett Girls favorite activity? 
Jenna is very social and loves to get out. She enjoys going to lunch, dinner or to the mall to walk around. We try to get out as much as possible. She also really loves music and watching television.  

What has been your biggest struggle so far? 
I'm not sure it's been one specific thing, but the overall fear of the unknown. It’s hard to predict what may come up and that can be very scary. Having a great support team at home via family, relatives or friends is important as they all can help you through those challenging times.  

What has brought you the most joy? 
Jenna has taught us all the importance of the little things in life such as making every moment count, spending time together, and just enjoying this wonderful life. Her smiles and laughter are contagious and helps us all put into perspective what is really important. She continually amazes us when she does something we never thought she would. That’s what is amazing about our girls- they are in there and will amaze you!  

How do you continue to make time for yourself? 
This is probably one of the most difficult things to do. It’s challenging to find help and find people who really understand our girls and women. We are blessed to have some great family that help out from time to time and really enjoy spending time with Jenna. It’s not a chore, instead they enjoy it. It’s important for you and your partner/spouse to give each other a break every now and then too. You have to reconcile that it’s just as important for you to take a break as it is to care for others. A short, small break from time to time can really give you the energy you need to endure. 

What do your Rett Girls goals look like as an adult? 
We work hard to keep Jenna healthy and happy and while continuing to experience life as much as possible. Because she loves to get out and do things, we work hard to try new things and make all opportunities possible for her. 

Thursday, September 28, 2017

Spotlight Series: Kimberly

We hope you learn something different from each of our families that take the time to share their experiences into adulthood with their daughter on this Rett syndrome journey. When it comes to being non-verbalsome may think our girls or women don’t understand or they just don’t talk to them. Meet Kimberly, 32, who loves to stay active and social and her mom RenĂ©.      
What is one piece of advice you would give to a Rett mom whose struggling?   
Talk! Talk with your friends or family to get those emotions out. Talk with other Rett moms because they understand more than anyone else.  Keeping things bottled up is not healthy. If that’s not enough, don't be afraid to seek out counseling and help from your doctor. It is never a sign of weakness to ask for help when life becomes more than we can handle. 

What would you tell a newly diagnosed family?    Rett Syndrome is a tough diagnosis. Please take everything one day at a time. Your world has just been flipped upside down and you have much to absorb and to deal with. Your child is the same person today as they were yesterday. But, your dreams for their future have changed in just a short time. Be kind to yourself and again, take it one day at a time. 

What is your Rett Girls favorite activity?   Someone just sitting down to talk with her. People interacting with her is by far her most favorite thing! She also enjoys shopping, church (she loves the singing), television and going to the movies. She is very social! 

What has been your biggest struggle so far?   My biggest struggle has been how to learn to appreciate each day and stop worrying so much about tomorrow. I am a planner because of my Type A personality. Rett syndrome doesn't always cooperate with my plans! Seriously, Kimberly has always been fragileI really struggled with worrying about tomorrow and at time forgot to live for today. It took me 4 years of therapy to learn that and I still have to remind myself every now and then. Kimberly is so amazing and I want and need to focus on enjoying every day with her to the fullest! 

What has brought you the most joy?   Kimberly has the best smiles and giggles. Just knowing and loving her is the biggest joy and getting to be her mom is the greatest gift. The friendships we have created over the years with other Rett families have been a great bonus. My dearest and closest friends have always been other Rett moms.  

How do you continue to make time for yourself?   
We have nursing now during the day. I get out of the house and shop, go to lunch and some days, I just take a good nap.  Nursing has been a Godsend for us. We did not have nursing until Kimberly was 27 years old. It opened up a whole new world for me. would encourage other families to explore your local resources and options which are available to you. Don't wait until your girls get older like we did. It’s so critically important to have the support you need for everyone involved.  

What do your Rett Girls goals look like as an adult?   
We focus on keeping her healthy because she is somewhat fragile. We also want her to have an active social life. We try to keep those two things in balance and it has been working well for us so far. Kimberly is happy and that makes everything worth it. 
We appreciate Kimberly and her mom, RenĂ© for sharing their experiences with us. We hope Kimberly continues to stay healthy and active in her social life. There’s no doubt, she’s likely the life of the party!