Ellie's Blog

Loving Ella I do not dwell, but yet I dream. I do not dwell on what has been lost, it's weight would break my heart. Instead I dream of what's to come. I dream of the day when I hear Ella call me YaYa again. I dream of the day when we walk side by side, talking and laughing. I dream because I know one day there will be a cure for Rett. It can not come soon enough. But until then we will love Ella. Love her and do everything possible to make her happy. Our love will get us to the day when Rett is a memory, when Rett has been cured. The love we share with Ella is our strength, her strength and that love will be with us always. It has never let us down and never will. This girl with her sparkling beautiful eyes, her smile, her laugh ... she has our hearts. Always has and always will.

March of 2015 I will never forget the call we got from Leah’s doctors. See Leah was at first diagnosed with autism, which we we’re sure with therapy we could make progress and get her help. Well low and be hold she was misdiagnosed with not only something like autism for which still broke our hearts but something like Rett Syndrome for which she would never get better. Genetics doctors wanted us to come in for a two hour appointment, which was the longest and worst two hours of my life! Basically we were told Leah’s never gonna walk, talk, feed herself, dress herself, write her name. Let me add when Leah was first born she was born with a club foot (devastating) let alone her getting misdiagnosed THEN to find out with something worse like Rett Syndrome. So here is basically what I want everyone that has a child who has no major problems to think about....... Imagine Imagine being sat in a chair, while you watch other people walk around...... Imagine going to the beach, being stuck on the sea wall, unless they have specialist wheelchair access, watching everyone else having fun on the sand and in the sea, and you can't do this because you're stuck in a chair........... Imagine seeing all the fair ground rides, and people screaming and having fun, and you can't do this because you're stuck in a chair. Imagine people walking round eating ice cream without a care in the world, while you can't hold an ice cream, because your arms no longer work or your fingers can’t grip..... Imagine having an itch that needs scratching, but you can't unless you ask someone to do it for you......... Imagine going out for dinner, and knowing everyone is watching as you're struggling to feed yourself and then you have to be fed in public, people now really stare.......... Imagine watching others giving each other a hug, knowing you can't do that anymore........... Imagine seeing dogs on the street, who are loveable and all you want to do is stroke them, because this is your passion, but the dog is scared of your chair, and too big to be lifted to you, so you have to watch while others get to stroke it, while you desperately want to .............. Imagine having to be washed, and dressed while you just lay there wishing you could do all this yourself at your age... Imagine having to have help when you need the toilet, all the while wishing you had your own privacy to be able to do this yourself.......... Imagine going to bed at night, asking someone to get your legs this way, your arms that way, while wishing they would just move for you ........... Imagine at 12 years old, you still have to have a baby monitor and call out through the night because your body that will no longer work to be put into another position, when all you want is to not have to call for help and do it yourself....... Imagine laying in your bed having to depend on someone else to get you up every single morning... Imagine watching everyone open their Christmas gifts and you having to have somone do it for you all the while wish you could just rip the paper off yourself..... These are just a few examples of what will run through a childs head with Rett Syndrome........ Just take one day, and put yourself in this position, you wouldnt want to would you.......... So why should our loved ones have to.............. Imagine how they feel every day! Next time you're doing one of these things, imagine if you couldn't do it............. Imagine If you were Leah.... Please share and help us make people more aware of Rett Syndrome 💜💜💜 If you are a Rett family, please feel free to adapt as suits your child and add their name instead Thank you 💜💜💜 I love you Leah more than you could ever imagine. You are my inspiration! Lisa Hatton

Its difficult caring for a child with special needs like Rett Syndrome when there isn't a pandemic. We have done everything possible to keep our daughter Sierra, age 16, from getting Covid19. With all her health problems she is so vulnerable, and likely would not do well if she caught it. So when the pandemic started, Immediately my husband started working from home, and we all hunkered down. We got all our groceries and supplies delivered, and did all of Sierra's doctor appointments by video call. Like others with vulnerable family members, we stayed prisoners in our home. But happy to do it if it kept Sierra safe. But we were worried because Rett Syndrome is complicated, and problems come out of nowhere. Our worst fear was having to take Sierra to the doctor, or the hospital.

When you find out you’re pregnant you are cautious with your heart until you get past that first trimester. Then you anxiously wait till your 20 week ultrasound and feel relieved when they tell you everything looks great! Still you’re nervous until they’re safely in your arms but once you hold that perfect baby you feel relief. They’re here safe and healthy. I know the worry never stops. Things can always happen. But after that point you never really think anything could be wrong with your little miracle. Life likes to keep you on your toes though. February 29, 2020 was Rare Disease day. However, we are thankful every day for our rare girl. No, things didn’t turn out as planned. Yes, we still grieve the life we had envisioned for her. We have embraced this curve ball with much love and hope. We feel so blessed to have her. In whatever way that is. We thank our Heavenly Father daily. Korrie girl is a light in our family and continues to strengthen us and teach us. 💜 #raredisease #rarediseaseday #rettsyndrome #korriesstory #overpowerrett #riseaboverett #showusyourstripes #scarlettparksfoundation #purplepumpkinparty #curerett

I remember hearing from several parents before Sierra was of school age about how public schools for special needs are "what you make of them". I found out when she entered school that was not at all true. It is really the luck of the draw, whether your child ends up in a district that will truly benefit that child and accommodate their disabilities so that they will learn. Some parents get lucky with awesome teachers and therapists that see through their disabilities and see a child that wants and needs to learn. Some school districts have a hidden policy to win at all costs. And that win is not for the benefit of the child. Fighting us parents saves them money long-term. We usually give up because they wear us down mentally and financially. If you find your child in one of those school districts that is not helping your child, homeschooling can be a great option. The other problem with public schools is that a medically fragile child is very susceptible to getting ill from other sick kids. I pulled Sierra, age 16, out of public school in 2nd grade, and it was the best decision we could have made for her. The illness factor alone made it well worth it. Prior to homeschooling she had pneumonia twice, was sick constantly. She has not had pneumonia since, and rarely gets sick. This is even with having a sibling in public school. Since the children in special needs classes are also medically fragile, they tend to get sick more easily, and pass those illnesses to our kids. Another benefit, the flexibility to teach at any time. If she has a "sleepy" day, I am able to teach her in the evening when she is alert. And teaching can be done anywhere... grocery stores, museums, libraries, state/federal parks, etc. Outings are great opportunities to break up the monotony of teaching at home. And those dreadful IEPs, the stress, the tears, the time, all gone when you home school. When I began homeschooling Sierra it was a little overwhelming at first. What curriculum to choose? What's the best method of teaching a non-verbal child that has almost no hand use? It was helpful having an average child, her twin brother Dakota, in public school so I knew exactly what to teach. Elementary schools typically keep a lot of their curriculum on their class websites. The internet is a great resource, and there are a lot of school supply stores. So starting out, you can do it easily without a formal curriculum. With Sierra I started out using a white foam-board with Velcro, teaching with choice-making. I taught her the entire Dolche site word list (printed from Internet with Velcro on back), having her choose the word between 2-3 similar words. She would use eye-gaze, touch with her hand, lean towards, or touch with her head. Whatever her apraxia would allow her to do at that moment. She learned every word within a little over a month, and in a few months she was reading short sentences, correctly answering questions about what she read. A few more months later she was reading paragraphs...and then short stories. She learned math, some sign language, could choose accurately "which is President Grant?" between pictures of 3 presidents, etc. I knew she was smart, but even I was surprised by just how smart she was. This was a girl that the school district claimed had the intelligence of a 9 month old. Yes, it's a big job to home school your child with Rett Syndrome, but sometimes you are left with no choice and it can have such great results for that child!

November 2018. A month I will never forget. We had been on a journey for nearly 2 years trying to find an answer as to why our amazing daughter wasn’t reaching her milestones and even losing some of the few she had reached. We saw specialists, ran all the tests. Well, all the tests that insurance would cover. Nothing. She needed genetic testing and it came at a high price. Finally, in late 2017 we caught a break! Our family had been accepted into a research study and we would be getting the highest level of genetic testing done. We submitted our blood work in January of 2018 and then we waited. 10 months later we got the phone call. Rett syndrome. I had researched so many things that this was already on my mind. And oddly enough, there was more relief than anything. It wasn’t the worst-case scenario I had created in my mind. We could do this. I immediately immersed myself in researching more. I joined Facebook groups. I sent friend requests. I made connections. I was told about an educational conference a few hours away just about a week later, so I loaded up the kids and we went. I needed to know all I could. I am so thankful for those few weeks where I was able to fill my mind with hope and knowledge and to create instant friendships. I felt confident and strong. And then came the end of November. Korrie started having weird little muscle spasms. They were cute at first. I thought she was being silly. But it quickly progressed to heartbreaking. She was having full body muscle spasms and she was miserable. She couldn’t sleep. It was 24/7. We took her to our local children's hospital. They were so kind and loving but didn’t know what to do for us. We were sent home and told to fill a prescription. I finally tracked down the prescription and gave it to her and she was able to relax and fall asleep. In the meantime, I had reached out to Facebook about what was going on. I quickly had a message from Don Searcy with Scarlett Parks Foundation. He gave me the information to a Rett doctor in Oakland. I thought there was no way that she would help us having never met us. He assured me she would. That night I had the pleasure of speaking to Dr. Mary. Our angel. She guided me through the night. She knew it would be long and that we would likely be speaking often. She was right. The medicine was a very brief fix. The next day we were prepping to be sent to San Francisco to have her admitted. It was a whirlwind to say the least! We were told to plan on a couple of days. It turned into a 15-day hospitalization. We were in the best hands. Shortly after our return home, when Korrie was doing better, Don reached out again to meet for lunch. We were thrilled to meet him and thank him in person. He had arranged for the current Miss Central Valley of California, Ali Marie Macedo, to come and “crown” Korrie. It meant the world to us! Korrie was beaming and tears filled my eyes as I watched. I often think about what may have happened had Don not reached out. It may have ended up okay, but it wouldn’t have been the same smooth process. We are forever grateful. The whole timeline of events was truly God’s divine design. There is no other explanation. Decisions were made, people were placed in our lives at exact times, all in preparation for this trying time. The hardest part is over. But we are still surrounded by wonderful people and services. We are forever thankful to the Searcy’s and the Scarlett Parks Foundation and all they stand for. Rett syndrome is a rough road to travel. But the people you meet along the way, and the pure angel you are blessed enough to have in your home makes it bearable.