So I am weeks late with this post, but a lot has happened in the past month - a new president-elect, a new baby nephew, the thanksgiving holiday, and the first HIVEP2 family conference (more on that later!). But on November 8th, our incredible doctor in New York was featured in the Wall Street Journal. As part of the article, Curren and HIVEP disorder were mentioned! Dr Chung has provided motivation for me to continue to fight for Curren and HIVEP2 advocacy. Between the research opportunities and family conferences, we have so many more resources available to us than what you would expect for a community of only twelve patients. Rare disease patients can often feel isolated, but the opportunities that Dr Chung provides our community gives me hope for the future, and they have the potential to change my son's trajectory in life. We are so honored and blessed to be under Dr Chung and her team's care, and are beyond thrilled to have HIVEP2 mentioned in a national newspaper. From the Wall Street Journal on November 8th, 2016, "The Doctors who Solve Medical Mysteries":
Our HIVEP2 community also had our first virtual family conference this past week, and it was so encouraging to connect with these families and researchers. I cannot say enough amazing things about the Simons VIP project and the work they are doing to further advance our understanding of the genetic components underlying autism and developmental disabilities. We can't wait to see how our community will grow in 2017. In other exciting news, the revised 21st Century Cures Act passed by a sweeping 392-26 vote in the House of Representatives last week! While not everything that would have hugely benefited the rare disease community was included (such as the OPEN Act, additional resources for developing natural history registries for rare diseases, and more robust funding for the NIH and FDA), the revised bill is still a great step forward for the development of therapies for rare diseases. The White House is urging the Senate to promptly pass this bill so that the President can sign it before the end of the year. Thank you all for the support I receiving following my last blog post on the 21st Century Cures Act. Most exciting of all, Curren has been getting used to his new wheelchair over the past month. Within the past few days, it has all come together and he is able to push his chair all by himself. This is short of incredible, as many things that most find easy can be incredibly challenging for Curren. After 3 years, my little guy is finally able to move around without relying on others, and it is the greatest feeling in the world!
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With the holidays coming up around the corner, we have been talking a lot about Christmas lists. My 7 year old son Weston already knows precisely what he wants: a play station, a bow and arrow, and some magic tricks. Since Curren isn‘t yet able to talk, I told Weston he has the important task of coming up with the perfect list for Curren, and telling Santa what his brother wants. We have been running through lots of ideas, but what do you get a sweet 3-year old with a rare neurodevelopmental disorder who would rather high-five everyone in the room than play with toys? There are tons of therapy tools and adaptive equipment that would be helpful for Curren, but that’s really not all that fun for a little guy that already does 9 hours of therapy every week. I asked Weston what he thought the one thing in the world his brother would want for Christmas more than anything else would be, and his answer was difficult - he would want to walk and talk and play with friends. That really would be the ultimate gift, but how in the world do we get there? The majority of my time and thoughts have been consumed with this idea for over a year now. It’s the reason for the trips to New York and Baltimore, for my husband leaving his job, for the challenging gluten-free diary-free diet, for the midnight googling and worrying, for the pubmed alerts, for the intensive therapies, for the B12 injections - all for the hope that we stumble upon a doctor or researcher or therapy than can level the playing field a bit more and help Curren to achieve his personal best in life. How do we get more research, better management, more treatments, and eventually a cure? We are not the only family. It is estimated that over 30 million Americans are battling a rare disease today, and half of those affected are children. Of those children, 30% will not live to their 5th birthday. Over half of all rare diseases don’t have a specific foundation supporting or researching their condition (including Curren's condition, HIVEP2 disorder). How do we get cures now? There is hope today for the future. For my family and millions of others, it is found in the 21st Century Cures Act, which passed 343-77 in the House of Representatives last year, but has not yet passed through the Senate. Chairman Fred Upton (R-Michigan) calls the landmark innovative effort a “once-in-a-generation, transformational opportunity to change the way we treat disease.” Senate Majority Leader Mitch McConnell (R-Kentucky) said that the bill “could end up being the most significant piece of legislation we pass in the whole Congress." This act would not only benefit the rare disease community, but "could really change the face of cancer" according to Jon Retzlaff, managing director of science policy and government relations at the American Association for Cancer Research. If the 21st Century Cures Act passes, what would it mean for Curren, for others living with a rare disease, and for those battling cancer? it will accelerate the discovery, development, and delivery of life saving and life improving therapies, and transform the quest for faster cures. This will be achieved by removing barriers for research collaboration, by incorporating the patient perspective into the drug development and regulatory review process, by measuring success and identifying diseases earlier through personalized medicine, by providing new incentives for the development of drugs for rare diseases, and by investing in 21st century science and next generation investigators - all while keeping and creating jobs here in the United States. This act could double the number of therapies available for rare disease patients. This bipartisan act has been years in the making and is supported by hundreds of groups across the patient and research spectrum., but is in danger of not becoming law. There is word that some in Congress are attempting to remove substantial portions of the bill, including the Open Act, which would effectively kill the bill in Congress. A delay in legislation is a delay in life-saving treatment for patients. If you feel so inclined, please help us make cures a reality for Curren and millions of others! The #CuresNOW page provides many easy ways to promote the 21st Century Cures Act. Please help all those who want nothing more than cures for their loved ones this holiday! My son Curren has magical blue eyes and beautiful red hair, which happens to be the rarest eye and hair color combination in the world. But making him even more rare is the genetic disorder he has been diagnosed with. While the numbers have grown since last year's diagnosis, he is currently only one of twelve know in the world with a disease-causing mutation in a gene called HIVEP2. There are not many resources available at this time, and the current management approach is to treat the symptoms, which often include intellectual disability, autism, seizures, sleep disorders, vision problems, speech delays, movement disorders, and developmental regressions.
It has now been a year since Curren's diagnosis - a year filled with soaring highs and defeating lows. Managing a life-altering diagnosis has been overwhelming, and has brought about some striking juxtapositions. I have somehow become both stronger and more fragile at the same time. We have developed an amazing support network of therapists, teachers, and case managers, and yet somehow we feel increasingly isolated. I find myself outwardly expressing a steadfast optimism, but internally I have felt unease since the day of the diagnosis and every day since. I question what more can I do with the waking hours I have, and when will it be too late to make a difference? It is a heavy weight to carry, and the uncertainty of not knowing whether there may be a potential treatment that would improve my son's quality of life if ever available is heart crushing. As we have navigated this past year, I keep searching for places where there are more children like Curren, and surprisingly, we keep coming up short. At the early intervention center, Curren was the only child in the program who couldn't walk. He is one of the only non-verbal children in his new special needs preschool, and there are no other children in wheelchairs. Some of the specialists we see just toss their hands up with no recommendations and say "see you again in 6 months". Not only is Curren developmentally delayed, but his physical appearance and size is much more like that of a young toddler, so strangers usually refer to him as a baby and are flabbergasted if I tell them he is three. And that leads to perhaps my biggest worry. Curren is a very social child, and he adores interaction with others. He works so diligently to get people's attention and to get them to smile and wave to him. It incredibly charming right now, because he is perceived as a bubbly little baby with a contagious grin. But how will the world treat him when he is 7, 16, or 30 years old and no longer a cute small child? Curren has differences in his brain which cause him to take him longer to react and respond to people, but his intent is there. Will he be left in the dust in this world as our society becomes more impatient and focused on instant gratification? Through the challenges, a new perspective arises, and it is clear that being a caretaker and an advocate for a child with special needs brings life to a whole new level of richness and beautiful complexity. The emotion that is felt when hearing your child's sweet voice say "mama" after 2 years of trying is indescribable. Watching your son break down in frustration every day for weeks upon weeks makes that giant belly laugh seem like the bees knees. The dark does not destroy the light, rather it defines it. Life is enriched by difficulty, and I am honored to be chosen for this journey. -Climb mountains not so the world can see you, but so you can see the world-
Today Curren had his 6 month recheck with our local geneticist. This is the first time we have been back since we received Curren's HIVEP2 diagnosis. I think back to those first few weeks that were spent trying to wrap our heads around the information we received, and I quickly threw together a post describing everything I knew at that point (which was not much at all) - without a plan, but hoping to get something to stick. We were given a diagnosis that only 3 others in the world had, and none of our doctors were even familiar with the gene. I scoured every PubMed article I could find that seemed relevant, and blasted emails to dozens of doctors and researchers each weekend. I felt guilty as I mourned the loss of the child I had imagined, and tried to cope with the reality of our situation. Today has a very different perspective. It feels like we are light years from that moment 6 months ago. We have accomplished so much in such a short period of time, and the future is looking bright. My mind is blown at these incredible advocacy milestones that have all happened in a matter of months. Curren has been medically published, we have 2 amazing community fundraisers going to support HIVEP2 children, I have found 2 other wonderful mom's of children with HIVEP2 disorder, we have an incredible research-driven doctor starting biological lab studies on HIVEP2, Curren's story was published here and here and here, but best of all Curren is healthy and happy and loved so dearly! Thank you to everyone for all the love and support. We really are climbing mountains and getting a better view (and starting to stand on our own with very minimal assistance from dad!) I can't believe it has been almost 2 months since Rare Disease Day, and I really can't believe how much has changed in just that short amount of time. About a month ago, I was checking my weekly notifications from PubMed. I have alerts set up for keywords relating to Curren's disorder, and on this particular day, something very exciting that never had happened before happened. There was an alert for a medical publication using the keyword "HIVEP2". My heart actually stopped beating for a few seconds as read the name of the paper, "Mutations in HIVEP2 are associated with developmental delay, intellectual disability, and dysmorphic features". Were there other children that had been found? Is there active research going on? I quickly scanned the document and found three incredible and somewhat unbelievable things:
Our advocacy journey has catapulted from next to nothing, to phenomenal (given the context). I was able to contact and discuss Curren's case with Dr Wendy Chung, the senior author from Columbia. We were also accepted into a study called the Simons VIP (Variation in Individuals Project), that aims to collect natural history information for families with specific genetic changes that have a known association to neurodevelopmental disorders, like seizures, developmental delay, and/or features of autism. We are hoping to get enough families enrolled in the study to begin lab studies specific to how HIVEP2 works. Curren has also just been accepted into another study through the University of Groningen in the Netherlands. The project is working to gather information from parents to better understand chromosome 6 abnormalities, including gene mutations. We also found out that a 10th child was diagnosed with HIVEP2 dysfunction last week (this is outside of the 9 published children). We have also had some incredible support from the local community. The Cove Merchant's Association is hosting the annual Port Canaveral Mac Attack fishing tournament on Saturday June 18th, and they have decided to donate tournament proceeds to Ability Plus in Melbourne to sponsor an intensive therapy program for Curren and to help other children in need. Also, Curren has created some bright and beautiful artwork, and my wonderful friend Amy has designed special Jamberry nail wraps from his work! Our friend Ryann also has a beautiful and fun bubble design. These two special edition Jamberry nail wrap collections are bold and perfect for summer, and proceeds benefit HIVEP2 support. We also recently attended a wonderful event, hosted by Ability Plus and No Limits Academy - the Everyone Can Dance Ball. The resources that these organizations provide to the community are incredible, and we are so blessed to be part of their village. All of Curren's therapists danced with him and everyone had a blast. Here are some of my favorite pictures, wasn't he so dapper? I had no idea that we would come so far in such a short period of time, and it's hard to imagine what the next few months may have in store. I am so grateful to everyone that is rooting for Curren and keeping us in your thoughts and prayers! The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ is a charge for everyone to join the rare disease community in making known the impact of rare diseases. I am happy to share Curren's story, in the hopes that his voice helps to bring about change! Curren’s first few weeks of life started out calm and beautiful. But he caught his first cold when he was 6 weeks old, and was perpetually sick for the next year and a half. We went to the ER at 4 months old due to respiratory distress. Shortly after, Curren was diagnosed with failure to thrive due to weight loss. Over the next few years, Curren’s growth and development remained stagnant as we desperately tried to pinpoint the reason behind his delays and regressions. We experienced incredible highs and heart-breaking lows, but mostly we felt isolated and alone. Eventually we arrived at an answer. Curren has a single-point mutation in the HIVEP2 gene that is predicted to affect brain growth and development, immunity, hormone production, and bone remodeling. There is one other child in the US currently known to have a HIVEP2 loss-of-function mutation - our friend Ryann. Because our voice is so small, we have not found much in the way of understanding our diagnosis, or possible treatment/management options. We have no information about prognosis. The response from most doctors or programs is one of two: (1) You already have a diagnosis, we are here to help the undiagnosed, or (2) There is nothing more you can be doing to help your child. I can't accept the second response.
I have been doing research on the HIVPE2 gene function, and have found affected pathways that are also compromised in more well-researched syndromes that currently have treatment trials underway (Phelan-McDermid Syndrome SHANK mutations and HIVEP2 both affect SSTR-2 function, Rett Syndrome gene mutations and HIVEP2 both upregulate the NF-kB pathway, increased MGluR5 signaling is common to both Fragile X and HIVEP2). My biggest hope for the future is that a more comprehensive approach can be taken with rare diseases. What if one of the treatments for a more well-known disease could benefit Curren and Ryann (and possibly many others)? I spoke with the doctor overseeing the Phelan-McDermid and Autism Specrum Disorder IGF-1 clinical trials regarding the common pathways I had found, and if he thought that IGF-1 treatments might benefit Curren. The response was that it was likely, but we don't meet the criteria for any of the trials, and the IGF-1 treatments currently cost over $100,000 a year. I am in awe of the advancements in the field of clinical and scientific research, but I wish there was a quicker way to apply broad findings to specific cases. It is heartbreaking to see Curren break down in frustration due to his current limitations with communication and mobility. I want so badly to give him every opportunity to be able to express himself and move independently. My mission is to keep my son happy and healthy, and I believe that will be best achieved through accelerating research and raising awareness. My hope is that World Rare Disease Day brings a new level of awareness to a critical issue. More people are affected by Rare Diseases than cancer and AIDS combined, but many with Rare Diseases have no resources, support groups, or research opportunities. Please help Curren's and Ryann's (and all the beautiful others) voice be heard by sharing our story! The past 3 weeks have brought lots of new and exciting changes. We did intensive movement therapy last weekend, and are now seeing a very noticeable difference in Curren's motivation to move. He went to the Connectivity Center in Melbourne for Anat Baniel Movement Therapy (ABM therapy) in the morning and afternoon for 3 days. The therapy was different than anything else we have tried - it was very much on his terms. So he decided what he wanted to do, and the therapist helped facilitate the movement. The philosophy is that the movement becomes more hard-wired in his brain if he is the one that initiates it. So overall, lots of kneeling, reaching, rolling, and scooting through play - with an emphasis on posture and body placement. Curren worked so hard and we are very proud of him! For the first time, he is now consistently pushing up from his tummy to hands and knees, and the sitting down. This is huge, as he had always been stuck on his tummy (which caused lots of frustration!) Curren is also making great progress with his goals in his traditional therapies. He is making new sounds at speech and becoming really fantastic at mimicking. He has been working in the spider suit, which is a belt and bungee system that provides enough support for Curren to stand and bounce. He has been working on various activities in the spider suit with a rope in front of him - unclipping clothespins, throwing a ball over the rope, and hanging on for support while jumping. He was also trying to say "up" when he was throwing the ball. Working on PT, OT, and ST all at once! We also just started new therapy at the Scott Center. It's called Applied Behavior Analysis therapy, and we are going to focus on communication, expression of wants/needs, reducing distractions, and overall socialization. His therapists seem very sweet, and Curren really seems to like them a lot. His weeks are pretty jam packed with activities now, but all of these services seem to be making gains in forward progress, and we are so thankful for all of the help that Curren gets. It was almost 3 weeks ago when we went to Kennedy Krieger and the Children's Hospital of Philadelphia. (And I am so glad we're not up there right now in a bliazzard!) It was a super busy trip - we stayed in 3 different hotels over 4 days. Curren was a rock star the whole trip. He was so happy, and loved everything - the plane, the elevators, the hospitals, and the arctic-freezing cold air. The best part about the trip was the wonderful people we visited with. There is only one other child in the US currently known to have a HIVEP2 mutation, and we were so fortunate to meet her and her sweet mother. It was helpful for me to find another on this journey that feels overall rather lonely. In the context of things, our children are one in a billion, and it's not easy to spark medical interest with those odds. Needless to say, the visits with the doctors were not what I had hoped for. I was impressed by the effort Kennedy Krieger put forward. At one point, there were 5 doctors in our room, listening to me trying to summarize a medical record that is thousands of pages long in 15 minutes. We found out there are structural abnormalities in Curren's brain they observed by reading his MRI from when he was 9 months old. He has a thinning corpus callosum, which connects the left and right hemispheres of the brain, and delayed myelination (immaturity of the plasma membrane that allows nerve impulses to move quickly). This was really about the extent of the beneficial medical information we got from our trip. The other really wonderful part of our trip was a visit with a very old family friend in Philadelphia. We visited with a beautiful soul who played an important part in my childhood, and I haven't seen her in over 20 years. It is so great to have those people in life where decades can go by, and yet it feels like time has stood still when reunited. It was truly amazing to see our old friend. The director of clinical genetics at CHOP told me something that put things into context. She said that Curren is a pioneer, and is just writing the beginning of the story. When we got a diagnosis 3 months ago, I started a crazy midnight googling effort. I have reached out to over 50 different doctors, hospitals, research programs, and clinical studies. We got appointments with 2. We have been rejected time and time and time again. When I got some interest from someone followed by a rejection, it shattered me each time. I had hopes that there was some type of medical intervention that I didn't know about that would improve Curren's life. I am realizing now that there is just incredibly limited information available about this gene and the effects when it doesn't work properly. A rare or orphan disease is defined by a condition that affects fewer than 200,000 people in the United States. Right now, HIVEP2 mutations affect 2. We are dealing with an ultra-ultra-ultra rare disease, and there is simply a lack of information available. It's not the answer that I hoped for, but I am at peace with it (and that was not easy). I am going to focus my energy on what I do have control over - providing quality therapies, feeding this baby uber-nutritional food, living in the present, and celebrating the awesomeness that Curren is!. Love this boy! It's hard to believe that it is now 2016. What a whirlwind of craziness 2015 was, and it has come and gone. Personally, I was not a fan. I mean it was hard to beat 2014 - new fantastic house, new adorable baby, 12 week maternity leave to hang with my kiddos - but 2015 wasn't even in the running. I feel like we were pretty much stuck under a dark stormy cloud the.entire.year. I am so looking forward to a better 2016, and we're starting off with a bang! Tomorrow we leave for our first big medical adventure up north. We will be seeing several of the doctors that contributed to a recent HIVEP2 medical publication at Kennedy Krieger. We will also be meeting with the director of clinical genetics at the Children's Hospital of Philadelphia. I am super excited (and nervous) about the trip, and really hoping to get some better insight into Curren's care and treatment. I'm also hoping that Curren doesn't get sick from the planes and hospitals, that we don't freeze to death (the low is 16!), and that I can accommodate Curren's gluten-free/dairy-free diet while we travel. I also wanted to share a great book I started reading over the holiday, and I think it would appeal to all walks of life. "Far from the Tree" by Andrew Solomon is about ordinary people facing extreme, and potentially isolating, challenges. The book focuses on the search for identity through struggle. I underlined a short passage, and I'm going to make it my thesis for 2016: Life is enriched by difficulty; love is made more acute when it requires exertion.....It is not suffering that is precious, but the concentric pearlescence with which we contain it. The raw grit of anguish will never be in short supply. There is enough of it in the happiest life to serve these instructive purposes and there always will be....We all have our darkness, and the trick is making something exalted of it. I hope that everyone can make the most of their darkness, and have a wonderful new year. Here's to 2016! I am beyond exited that Thanksgiving is just around the corner. I can't wait to have a few extra days off to hang out with my husband and kiddos (especially after coming off of a 60+ hour work week last week), and to visit with my family. Excited for the food, too! And I just love Thanksgiving weekend, because that's usually when we get a Christmas tree and get all festive. I hope that everyone has a spectacularly fat and happy holiday.
Oh boy, do I have have so much to be thankful for. First off, my three Ramsey men (who are the light of my life) - thank you for being so fabulous. My husband is the Rhino glue in this family, thank you Barry for holding it all together, especially in these past few crazy weeks.. Thank you to my oldest son Weston, for being the caring, thoughtful, spunky wild child that you are. You make every day colorful and adventurous. And thank you to my little warrior peanut Curren for all the smiles and belly laughs that keep us all moving forward. To my mother, who has been relentlessly supportive through the difficult times this past year has brought, thank you for your foundation. It may not have been actually possible to survive this year without your help. My children are so incredibly blessed to have such a loving grandma, who genuinely loves them for exactly who they are. You have made them so important in your life, and that is the greatest gift you could give them. Thank you for everything that you do for us. Thank you to my grandparents, Mary Jean and Rodney, who are the most amazing people on the planet. You have always put family first, and are such incredible role models. And thank you to our fabulous team of awesomeness (I mean therapists) who have pushed Curren so hard this past year and have become such an important part of our lives. I am over the moon with the glorious week that Curren had last week. He was happy, healthy, and loving. But best of all, he had a huge milestone. He started actually pushing his legs in his little yellow pony walker. So much, in fact, that by the end of the weekend he was zooming around the living room from one end to the other. This is huge for this little guy, he is starting to figure out what his legs are capable of doing. It's been a beautiful weekend! I also wanted to thank our photographer, Erika Iurovich, for the fabulous holiday pictures she captured of my little guys. These pictures just make me giddy, Love these two with all my heart, thank you so much Erika! Everyone have a beautiful and blessed Thanksgiving! This past week, we received information about Curren that is both hopeful and heartbreaking at the same time. My very first post touched on my anxiety over the unknown, and with this information now comes a whole new level of anxiety. Curren’s Whole Exome Sequencing genetic testing results came in, after over 4 months of (very anxiously) waiting. The test was denied by insurance, on the premise that it wasn’t medically necessary. Whole Exome Sequencing typically has about a 25% chance of providing meaningful results, and in our case, we were told it would be closer to 35%, due Curren’s severe developmental delays. Since the coverage was denied by insurance, I didn’t expect to get the results. And even if it were to be analyzed, the odds were greater than not of getting useful information back….and yet somehow we did.
We found out that Curren has a variant (D397Y) in his HIVEP2 gene that is most likely causing severe developmental delays and chronic medical problems. It is incredibly rare – according to GeneDx there are only 3 others in the world that are currently known to have a HIVEP2 variant, and each of these individuals have unique variants. The clinical features of HIVEP2 mutations are moderate to severe intellectual disability, developmental delay, autism spectrum disorder, easy fatigability, and hypotonia (low muscle tone). The HIVEP2 gene's function is very complex - it is responsible for regulating the activity of about 25 different genes that control brain growth and development. My son’s variant is predicted to be damaging to DNA structure and function, resulting in loss of function in the brain. Other functions that seem to be affected are cell immunity, brain signaling pathways, pituitary hormone production, bone remodeling, and memory. All of this from one misspelling in a series of 2446 amino acids, in one gene of over 20,000. It is just a tiny mistake in the grand context of things, but so significant to the overall function of the brain. There have been recent lab studies on mice where the HIVEP2 gene has been made inoperative, and the results were brain inflammation, memory deficits, and hyperactivity. The mice were treated with anti-inflammatories and other trial medications and some of their neurological features improved. I have hope that therapeutic options like these may eventually become available for Curren. Curren is now two years old, and has many severe deficits. He is not able to yet crawl, speak words, or communicate through signing, gestures, or pointing. He has been sick for more of his life than not - I tallied up the courses of antibiotics he has been on, and it has been 17 times in 25 months of life. He is in the 1st percentile for height, 3rd percentile for weight, and 7th percentile for head circumference, despite a modified high-calorie/high-fat/high-protein diet. He is in 8 hours of therapy weekly, attends an early intervention preschool part-time, and his daddy now stays home with him to do lots of one-on-one work and bring him to all his appointments. Above all else, my most important job in life right now is to be Curren’s voice. I want the world to know just how important my son’s development is. It is heartbreaking to see him master a simple skill (like waving a month ago) and then lose it. As incredible as it was that he crawled on his hands and knees with assistance a few weeks ago (accomplishments!), he has not been able to do it again since. My hope is that our therapeutic options don't end here. With the new information we now have, I want my son to have the opportunity to see doctors and researchers that have an interest in pursuing management and treatment options tailored to his unique challenges. I know that there are (incredibly smart) people in this world that would be very interested in researching this further, we just need to find them! If you are reading this post, could you please help Curren and share this information with the world? My biggest hope right now is that his information will somehow fall into the hands of the right person. We are willing to travel anywhere to find someone interested in helping my son overcome/manage his biological barriers. Thank you all so much from the very bottom of my heart. |
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About MeI am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life. Categories
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