![]() A Tribute to my Sister, Lori Lee 12/20/75 – 9/06/06 By Avery 09/07/06
I Saw You I saw you today in the morning dew As brilliant as a sea of shimmering diamonds I shared the most amazing sunrise with you today A million shades of red so random in their perfection I heard you today in the laugh of my children An enchanting melody a thousand angels strong I walked with you today and we talked about everything …and nothing all at once I saw you today in the changing of the leaves The colors of your life, the close of one season And the ushering in of another I sat beside a stream with you today The peaceful flow, steady and constant I saw you today…and you were perfect And rest assured…I shall see you again |
Author Archives: Angela Waits
Aoun
Aoun |
21 September 1995 – 19 March 2011 ![]() This is a short story of how we lost our son.
|
Kate L.
Kate L. Kate was born May 25, 2007 and weighed in at a healthy 7lbs, 3oz. Kate was diagnosed with Propionic Acidemia after we received notification that her Newborn Screening result came back abnormal. We received the initial report when Kate was about 11 days old, and after additional testing we received confirmation of the PA diagnosis when Kate was 20 days old. During this time, Kate showed some symptoms of PA—such as sleeping more than typical newborns, she was losing weight and wasn’t consuming enough milk. On Wednesday June 13, 2007 Kate was admitted to the hospital and her lab work indicated that she was headed for trouble. She was moved to ICU and protein was removed from her diet. Kate received her special metabolic food and nutrition through an NG tube and we began learning more about her disorder. Kate quickly showed improvement after her diet was changed. Her blood ammonia dropped to a normal range from its high of 450. After Kate is now 13 months old. We have be extremely fortunate as she has been stable, healthy and growing since she was released from Cook Children’s Hospital last year. We work very closely with her metabolic team. Kate eats solid foods in addition to drinking her metabolic formula. She just started walking and says more than 10 words. She is currently on target in all areas developmentally. Kate is a very happy girl with a sweet and loving demeanor. As parents we are grateful for so many things. We believe that Kate’s life was saved because of Newborn Screening. If Kate had not been diagnosed early, we believe that she would have become very ill and where we lived in rural Texas was 3 hours from the specialized medical care that she would have needed. The newborn screening in Texas was expanded in early 2007 (about 6 months before Kate was born) to include Propionic Acidemia. We are eternally grateful the people that worked to get newborn screening expanded in Texas. We have a wonderful relationship with all of Kate’s doctors and medical providers. They are truly invested in Kate’s well-being. We have had unbelievable support and help from our family and friends. We have been able to network with other families that have children with PA and other metabolic disorders. These parents share information and provide support. We hope to be a support to other families in the future. Landon, Sarah and Kate Lowry 达拉斯, TX June 2008 |
Lea and Eva
Lea and Eva
My husband is Juan Carlos, is 35 years old. I am |
Kristin B.
Kristin B. |
Kristin, 很难相信这是十四岁年来,在你出生. Texas did not screen for propionic acidemia in 1999, 我们发现硬盘的方式,当你五个月大. 你的第一个代谢危机登陆我们的家人在急诊室对你哥哥的第三个生日, 但当时医生只想到你有一个病毒. 经过静脉输液和葡萄糖三天他们送我们回家. 我们仍然不知道你在这一点上有PA,继续喂你高蛋白的Similac. 在接下来的一周,你就开始与缺乏情感下坡着呢, 极目远眺, 和持续呕吐. 到时候你滴溜溜你的头来回你的儿科医生打电话告诉我们你有PA. 幸运的是谁检查你的医生ER已下令有机酸测试 10 日前或我们仍然不知道发生了什么事给你. 我想,开始了最艰难的旅程你爸爸和我想象.当我们把你从医院回家你跛行, 感情,也没有上身力量. 你已经失去了你解除你的武器能力, 你的头不稳宛若新生, 你在腰部以上以失败告终. 你的皮肤非常苍白, 我曾与你形成这种心理联系不见了. 我不知道你是谁了. 我失去了我的女儿, 我不知道你会不会回来. 这是看待一个很难的事情, 日复一日. 但随着时间的推移, 有很大的耐心, 治疗和正常播放, 你已经成长为一个非常漂亮的小姐,谁可以做很多事情,我们最初以为你可能永远不会做. 虽然你不走, 您爬行或在家里到处都是膝盖走路, 与玩拼图, 音乐玩具和仪器, 您的迷你计算机和通信设备, 你喜欢唱歌与任何人的歌曲. 您现在已经没收了大部分的哥哥的旧玩具, 和你最好玩的游戏,这些天跨越与别人地板缩放卡车或风火轮汽车, 或摆动你的星球大战周围的光线军刀! 您喜爱的节目继续克利福德, 小熊, Zoboomafoo和素食故事. 你爱到外面去, 走在面包车游乐设施和弹钢琴. 你最喜欢的DVD演唱会是U2波诺演唱美好的一天. 你会站在你的膝盖在屏幕前与你脸上灿烂的笑容,然后拉你的衬衫了在你的头上,当波诺上台唱歌. 我的天啊, 如果你是 “normal” 我可能在我的手上野孩子你变成一个十几岁!多年来你PA的饮食和吃药都改变了不少. 你不再对反diuretc激素去氨加压素,因为我们发现, 再硬的方式, 你没有尿崩症. 这是在年龄错误的诊断 4 并以某种方式六年你设法对可能杀了你的药物做的很好. At age 10 你开始有癫痫发作,每个人都感到不解. 你从来没有发作,在过去. 最后, 我们意识到你没有足够的钠在你的饮食和一些测试后,确定您的肾脏工作得很好,你也没必要去氨加压素. 你真的震惊了医生与一个. 一位医生说你包裹在一个谜益智盒子里面是一个谜! 你还承担了多项其目的是补充营养,以帮助缓解氧化应激或提高能源产量. 论文包括复合维生素B, 高剂量的生物素, 辅酶Q10, 维生素E, 琥珀酸钠和L-肉碱. 我们也给你维生素D3和额外的钙.一旦您量身定制的G-管饮食,多年来,包括格柏蔬菜, 水果和谷物被换下一个几年前与Propimex-2的合成配方组合, PROSOBEE和Polycose. 这种饮食应该把事情简单化 , 而是具有复杂的护理. 除了获得更多的非必要重, 你的新的饮食取得了你的皮肤看起来更苍白了,除非我们能够拿到外面你在阳光下了很多. 你是你的一个含有复合碳水化合物的饮食老更稳定 (麦片) 与包含Polycose或溶胶碳水化合物的新的饮食. 我敢肯定你的血糖保持在一个更均匀燕麦不是一个简单的血糖水平,导致你的血糖秒杀每 2 当你在白天推喂养小时. 主要的问题是,让你稳定,酮免费我们不得不增加更多的卡路里比我们想和你已经得到了相当沉重. 你总是很容易发胖, 但这种合成饲料造成您获得最. 已经开发了如你变老的另一个问题是,在蛋白质的增加,需要热量的增加或你生病. 这是一种讽刺的是,在年龄 14 我们理解你的好多了, 但是,它需要更多的摆弄你的饮食,让你稳定. 也许,这是青春期的伴侣?好, Kristin, 你现在是一个十几岁, 我们正在进入另一个黑匣子, 一个真正的未知. 我希望你继续保持稳定和快乐,一旦激素开始真正循环. 我希望你调整好你弟弟动过上大学一年左右. 你爱你的兄弟这么多! 什么是你爸爸和我应该做的,当埃里克是不是在这里说 “黑夜,黑夜克里斯汀!” 作为您签收上床? 你已经需要海拉明和褪黑激素睡不好觉. 我们可能要做见面时间! 甜蜜的梦南瓜, 我们爱你.No one can be prepared for the arrival of a special needs child. When you came
|
Nehori
Nehori
Two mounth ago he was at E.R in ittenssive care and almost lost his life cause an unstopable vomiting that caused him obfuscation his contionce , only after helfh a litter blood, he came to his senses. Today, we are considering a liver transplant on nehori, we are not sure cause we havent heard of any child that went a liver transplant yet. 更新: May 2012 Neoray had a liver transplant on November 2011 with the recommendation of |
Allison S.
Trent M.
Trent M. |
After arriving at Kosair Children’s hospital in Louisville, KY – he was immediately put on Phenobarbital, and had an EEG, MRI, & CT scan. He had seven seizures total that day. That next day, we met an angel right here on earth. Our neurologist, 博士. Vinay Puri. Without this man, our little Trent would have not be alive today. After a couple days of constant blood work, numerous tests and a muscle biopsy, 博士. Puri told us that he believed Trent had Leigh’s Disease. The life expectancy of Leigh’s disease is 5 to 6 years. Of course, our families were devastated. We were in the hospital for eight days on our first stay, so were ready to go home and enjoy what time that we had left with Trent. We went home from the hospital with instructions to take 7 or 8 over the counter vitamins/medicines. On our first night at home, 博士. Puri called and proclaimed the good news that Trent didn’t have Leigh’s but he had PA. Knowing only that PA had to do with protein, we thought “Oh wow, we will have to buy everyone a cookbook so that we make Trent friendly dishes.” Little did we know, that PA would impact so much more than our cooking. The first month of officially knowing it was PA was rough, going for blood work every few days to check Trent’s levels. 博士. Puri, who had never heard of PA before now, was communicating with Dr. George Hoganson for guidance on how to treat it. We were put on Carnitine, Biotin & Propimex 1. We could see Trent staying awake for longer amounts of time so we knew that we were on the right track. The feedings were still a battle though after a 4 oz bottle feeding, we would hold him in our arms for an hour or more to avoid the refluxing or projectile vomiting. This went on for a few months and then in July we ended up back in the hospital because we couldn’t get him to eat. He was becoming life less again. By this time, we had been introduced to OAA. While at our July hospital stay, we urged for a g-tube & Nissan. 博士. Puri agreed that it was the right thing to do. We were in the hospital for 18 days (and we thought 8 was a lot before!). Going home with the G-tube, we were finally able to meet the real Trent. It was like a miracle. Being able to get all of his needed calories into his system, he immediately become alive. We have a photo album and it makes you so sad just to look at the photos taken of him before the g-tube was placed. The g-tube was definitely the best choice for us. There had been so many days in his first few month of life, where he didn’t even have the energy to cry even during a blood draw. So these days, his just hearing him cry was music to our ears. With PA in our life, daycare was out of the question so my husband decided to work on a second shift schedule with his hours being from 3 – 11 pm. After a few more months, I finally went back to work and my hours are from 9 – 5 pm. Since our work hours overlap, Trent’s grandmother picks Trent up each day. She will stop & pick up Trent around 2:30 在 the afternoon and takes him to her house until I am off work. Our lives were getting some routine to them, not a typical family routine – but it’s ours. We had adjusted our schedules and outings to accommodate his every 3 hour tube feedings. Trent did really well for about a 4 month stretch, only requiring one quick 2 day stay in the hospital for fluids until Nov 2002. In Nov, he and I came down with a nasty stomach virus. This resulted in another 18 day hospital stay for us. Thanksgiving was nearing and we desperately wanted to be at home for the holidays. But Trent could not get rid of the diarrhea. While feeling desperate for some helpful medical advice, we got in touch with Julie Hardin in Lexington, Kentucky. She put us in touch with Dr. Rani Singh at Emory Genetics. Thru the advice of Julie & 博士. Singh, his diarrhea was finally stopped and we were released from the hospital the day before Thanksgiving. Since then, 博士. Singh follows Trent. She is another angel right here on Earth. She has helped us weather that same stomach virus since at home without a hospital stay. As the 2003 year went by, things were getting progressively better for Trent. His early intervention was in full swing with PT, OT, Nutrition Services, & Speech. Our therapists proved to be awesome. At around 10 months old he sat up alone. begin crawling at around 14 months & walking at 19 months. The speech & eating parts were (and still are) by far the hardest. Trent said his first word, “MA MA” at around 23 month of age. Knocking on wood, the Nov 2002 has been our last hospital stay. Trent is 4 years old now & still delayed in every aspect but he is making progress daily. I would compare him to a 2 ½ year old child. He is doing much better with OT & PT. His attention span is still very short and he typically wants to play things “his own way”. His speech has really picked up lately too, although some of it is still hard to understand. His vocabulary probably consists of about 50 – 75 words and lately he is really into repeating what he hears. He will sometimes put a 2 to 3 word sentence together. He has private feeding therapy every other week. At this time, he gets nothing by mouth and will only drink when forced. Currently his feedings are every 3 hours with three oz of juice given between each formula feeding. At night, he is hooked up to an overnight pump. Having a tube feeding every hour & a half can be a little time consuming but since Trent has done so well with it, we prefer to just let it be. Outings are normally planned around the feeding schedules & the weather. We aren’t giving up hope that one day when eating becomes a social issue then he will want to take part and eat by mouth. He did attend preschool two days a week last year. He had terrible attendance (he was only there for 15 days) because he was always carrying home the latest germ. His 2nd year of preschool will be starting very soon. It is so hard to “let go” & send him to school – but we know that he needs the socialization side of school. His grandmother works at the same school, so it is comforting knowing that she is always nearby. Trent loves typical kid things – singing, coloring, playing in rocks, feeding the fish at his Papa’s & Nana’s house, & riding the four wheeler with his Pap. He is such a joy to be around. He has such a happy spirit about him (that is until you pull into his doctor’s office). We hope & pray that the next few years find us having a healthy Trent who is continuing to talk up a storm & eat some by mouth. We know that God sent us a special child for a reason & even though PA causes our family stress on a daily basis, we know that God blessed us when he chose us to be the ones to take care of such a sweet little boy. Sincerely, The McKinley’s To see more pictures of Trent, check out the August 2006 通讯. |
Aidan P.
Aidan P Miracles Still Happen – The Miracle Continues Aidan, born on March 23, 1994 Birth of an angel Miracles still happen and my son Aidan, is a living miracle by me. Aidan turned 13 this year. He is a happy, cheerful, handsome boy who was diagnosed with Propionic Acidemia when he was 3 weeks old. Aidan had a difficult birth that was further complicated with a Steph infection when he was delivered. After spending in IICU during the first two weeks, he was released to us and everything seemed normal at that time. A few days later, we noticed that he seemed lethargic and inattentive with no inclination to feed. Repeated consultation with his pediatrician went no where and we were getting increasingly concerned that Aidan was fast approaching a comatose state. An unexpected call from the University of Pittsburgh that had screened Aidan’s blood for PKU revealed very high content and we were asked to rush Aidan immediately to the Children’s Hospital in Philadelphia. Aidan was seen immediately by a team of experts led by Dr. Paige Kaplan and admitted into the IICU (again) and placed on IV. It was found that he had very high levels of ammonia in his system. After several blood /platelet transfusions and a stay in the IICU for three weeks, Aidan was declared out of immediate danger and moved to the general pediatric ward. He was held in the hospital for a few more weeks before being allowed to go home. During his first year of life, Aidan was repeatedly hospitalized several times and each time it was a traumatic experience for all of us. He had spent over seven months in the hospital during the first twelve months of his life. The second year was slightly better with hospital stays that lasted days instead of months. Tough beginnings During the first few years the going was tough on all of us. It was extremely difficult for Aidan as we observed several global delays in him and he was late in hitting every developmental milestone. He did not walk until he was three years old and was not verbal until he was six years old. Aidan had a regiment of therapies as he was growing up and even though the therapies have dwindled over the years, he still continues to receive therapy on a regular basis. To put our ordeal into perspective, I have to give a little background on our life before Aidan. My husband Ravi migrated to the US from India for his graduate studies and I followed him here after our marriage. Aidan was born exactly a year after I came to the US. The culture shock, the extreme cold weather and the loneliness of leaving my family and loved ones behind, just added to the complexity of the situation. Our life together was an emotional roller coaster and we had no family or real friends who could offer support at these difficult times. We could not partake in social gatherings since we always ended up leaving early due to Aidan’s needs and as time went by, people started leaving us alone since they did not have the emotional maturity to understand our situation and offer support or they did not want to be bothered. We had no one to turn to except each other and this brought us closer to each other since we were committed to giving our son the best life possible and I found the purpose of my life revealed. For me, Aidan was never just a child, he is an angel sent from heaven on a mission. I am not saying this because I am his mother, but because everyone who comes in contact with him says the same. There have been strangers who have walked up to me and said your child’s face is angelic. His cheerful childish ways and endurance to pain in the worst of situations and his pure love for people is a miracle by its own. Better times Aidan was 3 years old when we moved to San Jose California. After a year of difficulty finding a good team of doctors, we became members of Kaiser Permanente. He was back again with an excellent team of doctors and nutritionist. His nutritionist Elaina Jurecki however has been the lead in shaping Aidan into what he is today. Her insights, knowledge and expertise has been a godsend to us. We also became very active in a South Asian organization called Jeena. This organization is a support organization for special need kids. The organization consisted of families with kids like us who were also looking for a social network and who had faced the same level of ostracization from their social peers and who were yearning to connect and share with others in a similar situation. The challenges that we faced as a family in the social front, led me to play an active part in establishing this organization along with its founder. Having a special need child and coming from a different country/culture provided many challenges. And having no family in the country made it essential to develop a network of dependable friends who could empathize and offer both emotional and physical support at the time of need. In this process we have met many good people and made many good friends. We had found our bearings and with the passing of years we have formed stable friendships that could last a lifetime. Aidan has been attending a special education school in San Jose. He was with the same Elementary school teacher/classroom for almost 5 years. He grew very attached to his teacher and it was also very difficult for his teacher to let him go. When he graduated from the elementary school she sent him off to middle school with a brand new Mac computer, a collection of software that can last a lifetime and books on several subjects that would serve a whole classroom full of kids. He is settling down slowly in his new school and adjusting to his new teacher. His new friends have taken to him well and are very fond of him. Besides school, he goes to Score Computer Based learning center. He is very computer savvy and knows his way around with PC games and software. He loves web surfing and his current favorite is Youtube where he watches his favorite TV theme songs such as Barney, Teletubbies, Scooby-Doo, Jeopardy, Wheel Of Fortune over and over again. He also goes swimming and attends gym classes in Jeena. Aidan has a younger brother Brenden who is 9 years old and who adores him. Aidan loves having his brother around. The beginning challenges we had in devoting equal amount of attention to both kids got easier as years went by. We have now learnt to balance our time and life between the two kids and also our careers. We also have a great nanny who helps us in taking care of the kids. We are able to travel places and do things that normal children do, like visiting theme parks, going to shows, going for bike rides etc. Aidan is finally able to ride a bike after so many years. This is a specially made bike with three wheels and pedals designed for children with physical difficulties. He wears braces to provide ankle support and uses a wheel chair when we go on long walks or have to travel to unknown places. He is very interested in music and dancing. He especially enjoys Indian music. He has an incredible sense of rhythm and it amazes me when I see him move to the beat even if he cannot use his legs very well. I often catch him dancing to music in front of the mirror. He has also participated in dances and performs in Jeena’s annual day celebrations. Successful completion of a decade He continues to be a miracle since his doctors gave us a very discouraging prognosis about his survival during the initial years of his life. So when he turned 11, I decided to publish a website for him. His website has brought in many contacts internationally and helps me keep in contact with people who have children with the same disorder in the far corners of the world, where they are not blessed with the quality treatment we get here. Working towards a cure – the Fundraiser I am a professional classical dancer and coupled with Aidan’s interest in Indian music and dance along with my husband’s and parents support, I decided to start an Indian dance school. The dance school has grown today quite a bit. Aidan completed 13 years this year and that made me believe that something needed to be done to raise awareness of this very rare disorder that even sounds alien to most pediatricians and medical professionals. Awareness is essential to raise funds and a CURE is needed to help our children. And it has to happen right now so that we can see some benefit from it during our lifetime. To keep the research going, we need funds. Being involved in a non-profit organization made me realize how hard it is to get a grant approved or to get donations coming in. So this year I decided to conduct a fundraiser for PA Foundation keeping in mind all my goals in increasing awareness and raising funds. My family supported me in this effort especially my kids and my husband. Along with the students and parents of my dance school we put together a dance performance and a fundraiser on May 12th 2007. My friends helped me by putting up a silent auction and volunteering their time and energy for the several tasks involved in making the event successful. The event was a huge success. It was attended by almost 500 people. Elaina Jurecki, Aidan’s nutritionist gave a presentation for about 20 minutes on the topic of PA and why funds were necessary to conduct research looking or a cure for this rare and devastating disorder. To many of the audience it was a revelation that such a disorder existed. There was no admission ticket charge and all the funds were raised through donations and the silent auction, was donated to the PA foundation for research. People not only donated during the event, but also several days after the event had taken place. Funds close to $3500 was raised during the event which has been sent to the PA foundation. In addition to the fundraising, there was quite a bit of media coverage on the event and its cause. But I believe that this is just the beginning. With my angel at my side, I am hoping to continue to contribute in whatever small way possible to help support this miracle and keep it alive. I have faith and belief that before long we will see the day when all our children will be CURED. Yes, the miracle still lives and will continue to thrive!! Selvi Mom to Aidan and Brenden Aidan’s Story is featured in the Fall 2007 通讯.
|
Elise
Elise |
My husband and I recently celebrated 15 years together which might not seem ![]() Our PA story began in October 2011 when our daughter Elise (1 week) was thought to potentially have an organic acid disorder based on her newborn screening. Elise was home from the hospital for one week all the while eating and sleeping great when her pediatrician indicated that her screening returned with elevated levels. My husband and I were not alarmed because her older brother Melbourne (18 months) had the same elevated screening when he was born and then it was deemed normal based on the repeat test. While we awaited Elise’s second set of results little Mel woke one morning not wanting to eat/drink, was moaning and running a fever. His right side arms and legs seemed to be limp. We rushed him to urgent care where they indicated that they thought he was having a stroke/seizure. Mel was transported to Children’s Hospital of WI where a number of tests, spinal tap, x-rays, and brain scans were performed on him that day. The following day we were told that they did not know what the cause was and we could go home and he would be put on anti seizure medicines. 在我们预期的发布前不久,几天前我们就 Elise 的情况与我们会面的遗传学团队进入了我们的房间。他们表示,他们认为 Mel 可能患有他们认为 Elise 患有 MMA 或 PA 的疾病,并且他遭受了代谢危机. After about a week in the hospital the diagnosis for Mel and Elise was confirmed; they both have PA. My husband and I had suspected something was going on with little Mel’s digestive system since he had terrible constipation and vomiting episodes since he was about 9 months old; when I stopped nursing and we put him on formula/milk. For nearly 9 months before his crisis we visited with multiple pediatricians, GI specialists, and ER visits to figure out what could be wrong. No one ever mentioned PA, and dismissed my asking if the vomiting/constipation had anything to do with his newborn screenings. We often think back to the signs and symptoms such as vomiting, gaging/choking, 昏睡, not thriving, staring spells, wobbling, and acid breath. 当时这是我们唯一的孩子,我们依靠专家来帮助我们弄清楚我们的孩子发生了什么事。梅尔和伊莉斯都发育良好; Mel is walking/running (getting into boy trouble) and starting to speak, he self-eats and drinks well. Since his crisis we have been following the PA diet very close with a Propimex mix and 15-16grams of protein/day. Elise is getting ready to crawl, she says “mama, dada, baba, and me” she is eating and drinking wonderfully a mix of Propimex/breast milk, and solid fruits and vegetables. Both children are taking Biotin, Carnatine, TriViSol, and Flagyl. Our goals are to continue to closely monitor the kid’s diet to take every precaution to keep them healthy. We are researching and considering PGD/IVF and cord blood banking in hopes that our future children will not be affected and can supply Mel and Elise with a potential cure from the cord blood. I have been in touch with newborn screening advocates to find out how we can share our newborn screening failure story with others and changes are made in the processes so other families do not have to face the challenges that we have. As I stated earlier God chose us to protect these babies and we will continue to fight for them. Elise was brought into our lives to save her brother; just days after her birth her brother started to lose his fight with PA and because of her help the doctors were able to save his life. We feel that our children will always have a close bond with each other and this will be quite the story to share with them when they are older and learn to protect one another time and time again. 更新 3/2024
It has been 12 自从我们收到他们的诊断以来已经有很多年了, 他们都在蓬勃发展. 我将他们的健康归功于 PA 的一个不错的变体, 健康的生活和上帝的旨意. 它并不受到所有人的欢迎, 但我们选择通过日常补充剂更全面地对待他们 (渴望, 鱼油, 辅酶Q10, 和肝脏剂量) 他们都服用左卡尼汀来帮助净化,并服用低剂量的依那普利来预防 PA 患者已知的心脏问题. 除此之外,我们尝试健康饮食和锻炼. 在某些方面,随着年龄的增长,他们更容易理解当他们摄入过多蛋白质或感冒并需要额外糖来感觉更好时身体的感受. 在其他方面,更难以控制份量并让他们远离一些他们最喜欢的食物. 梅尔是一名青少年,即将进入高中. 他有很多朋友, 大括号, 一个手机, 喜欢跑车, 政治, 视频游戏, 并且总是那个有趣的人. 他会尝试任何食物并接受辛辣食物的挑战. 此外, 我们还有另外两个很棒的孩子没有 PA. 然而,他们还有其他条件让我们保持警惕: 西尔维娅 (囊性纤维化) 和阿斯顿 (花生过敏). 我们的家人永远不会让 PA 定义我们是谁, 这只是我们要处理的事情. 目前, 他们是正常的孩子,有着健康的生活方式,并通过一个超越统计数据的奇迹永远地联系在一起. 如果有人想了解更多关于我们家族是如何管理PA的, 我们很高兴分享我们在倡导儿童权益方面的经验教训, 整体生活, 体外受精胚胎植入前诊断, 大脑平衡, 或其他什么 – 让我们联系.
Mel & Nicole |
/