| Gwen M. – updated May 2015 |
My beautiful girl just turned 9 years old this year and it seems nothing short of a miracle. At 2 days of age, Gwen became catastrophically ill, her body temperature dropped below 90 graus, ammonia level exceeded 1,500 umol/L and she stopped breathing. She was placed on a ventilator and received peritoneal dialysis for a couple of days until she came out of her coma and was breathing on her own. On her 3rd day she was diagnosed Propionic Acidemia and her future was very uncertain. During Gwen’s first 3 years of life she spent as much time in the hospital as she did at home. Although she’s been admitted more than 50 times, she’s undoubtedly one of the happiest people on Earth. At age 1 she stopped eating by mouth, and since then she’s been fed 100% by a feeding tube because she refuses to eat anything. For many years she wore a backpack to carry her feeding pump, but she is now able to tolerate her formula through small bolus feedings and has a nurse who cares for her during the day.Gwen knows she’s very cute and she plays that to her advantage. What she does not yet know is that she’s very brave, has an endless capacity to forgive, an amazing will to live, and a beautiful spirit from God that has touched the lives of hundreds. She talks non-stop, sings the entire time we’re in the car, jumps off of anything she can climb on, loves to dance, play with her American Girl dolls and spend time with her brother and friends. She’s in second grade and receives special education services for PT, OT, math and reading. She’s also in Brownies and on the Special Olympics swim team! She is a miracle, a daily blessing, and a ray of sunshine in any room. I am grateful for every day I have with her and so proud to be her mom.
—————————————————————————- Gwendolyn Grace M. was born at 3:33 p.m. on February 3, 2006. She will soon be only 5 months old, but has already brought a lot of drama to our lives! She was diagnosed at 3 days of age with Propionic Acidemia. At 2 days of life we found ourselves at Columbus Children’s Hospital emergency room only hours after being discharged from the hospital of her birth. We were quickly transferred to the NICU, where we spent the next 2 weeks. That first night at Children’s, her ammonia level reached over 1,500 & she had stopped breathing. The fantastic medical staff acted very quickly. Gwen was intubated & put on dialysis. We nearly lost her a couple of times during that stay, but she pulled through. She ended up having another episode less than 2 weeks after being discharged. Once again, she pulled through magnificently. We have quickly learned the fragile nature of good health, the strength of a family, along with the amazing power of prayer. My baby girl is nearly 4 months old & seems to be beating all the odds. Despite her rough beginning, she is meeting all her early milestones. Gwen has an awesome fun club, including her brother, parents, grandparents, aunts, uncles, cousins, doctors, nurses, teachers, & friends. We are so grateful for their love & support. Check out our new web-site with even more pictures – Click Here.
Gwen’s 1st B-day!!!! |
Arquivo da Categoria: Notícia & Anúncios
Toures Family
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Ryin age 8 and Austin age 6. Ryin was diagnosed at the age of 19 months old and Austin was diagnosed at birth,the boys see Dr. George Hoganson at Hope Childrens Hospital in Oak Lawn, Illinois. Dr.. Hoganson tells me that both boys have a very mild form of this disease, so they just take 10cc of carnitine twice a day, which makes them both very different from all of the other stories that I have read in the past, they need no special formula, no G tubes and both boys are allowed up to 40 grams of protein a day. I would love to hear from any other who family who has a child/ren with PA. Carrie |
Toures FamilyEilidh
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Leah M.
 Leah M.
Leah is now 8 years old. There have been many changes in the past few years. We moved to a new house, built an in-law apartment for her Meme who watches her after school, and inherited a new dog. (a black lab puppy). Leah also has 2 new cousins Rachel 1 ½ years & Brayden 1 year. Both were born happy & healthy. She has been very healthy and is growing taller now. For a long time her weight was a major issue and her height had stalled. We installed an above ground pool for her last year and the exercise has been great for her. Also we found a therapeutic horseback riding place for her to learn to ride and strengthen her muscles. She loves it. Leah still enjoys doing puzzles, listening to music, and watching movies. She’s a fairly easy going kid. She has a routine that we follow consistently that helps her to stay focused. She is in the second grade and is We just had an annual check-up and now have a list of follow up appointments to do. She had an echo, she’ll have an EEG and MRI in June and will be going back to follow-up with Dr.Korsons at Tuffs Medical Center in Boston. Leah’s diet consists of her formula containing Duocal, XMTVI Maxamaid, Pediasure and Complete Amino Acid Mix. She takes Carnitine, biotina, Dextromathorphan, CoEnzyeme Q10, Sodium Benzoate, Iron Supplement, B-1 & pyridoxine. She gets Zofran & Flagyl when needed and takes Zyrtec for allergy symptoms. She gets 3 feeding during the day with her Zervex, (the new Infinity) and an overnight. She has never been interested in eating but does enjoy chicken in a bisket crackers and buggles washed down with water. We have accepted that she may not eat and that is ok. We feel that if she is happy and healthy than that is all that matters. We love her the way she is and her happiness is the most important thing in the world to us. Thank you. |
Louie
| Louie |
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Alma, Louie and Bob My friend Alma asked me to write about her son, Louie, who was diagnosed with propionic acidemia when he was one month old. I found that I could not write Louie’s story without telling how he received a miracle — that miracle’s name is Alma — Joyce Putnam Louie was born in a remote Alaskan Village. He was diagnosed with Propionic Acidemia when he was one month old. It was difficult for Louie’s parents to care for him for two reasons. 1) The people in his village live a subsistence life-style — fishing & hunting for much of the food they needed. Because of high costs of shipping to remote villages, the low-protein foods Louie needs are expensive. Fresh fruits and vegetables are often unavailable in the local store. There was also the risk that someone else would feed Louie food he was not allowed to eat. In a native village, kids belong to the tribe, so it is common for well-meaning relatives to offer food to all of the kids. 2) Medical care in the village is inadequate for anyone with major health problems. When Louie had a medical crisis, they had to wait for an airplane to come to his village. Then he could be flown to Fairbanks for medical treatment. On one of these trips to Fairbanks, his overwhelmed mother abandoned him while he was in the hospital. Alma and Bob became Louie’s foster parents when he was 2 1/2 years old. Physically and mentally he was stilll an infant. He was tiny (undernourished). He had never learned to crawl or walk. Louie had major health problems. His prognosis was poor. PA had caused his rectum to fail. His ears and sinuses were chronically infected. Louie was expected to remain an infant the rest of his life. His muscles and bones were so weak, nobody ever expected him to learn to walk. He was not expected to live to age 5. Today Louie is a 12 year old boy with the body of a small 8 year old (He is 47 inches tall and weighs 42 pounds.) Mentally he is a mischievous two-year old. When he is healthy, Louie enjoys life. He can walk, climb, and ride a tricycle. He loves playing basketball, going for rides with Alma on her John Deere Gator, and going to school. He enjoys music and has his own guitar he likes to play. He shows off to get attention. He has a sense of humor and laughs a lot. He is full of love. He enjoys giving and receiving hugs. As any normal “two year-old”, his favorite people are his “Mama” e “Dada”, his adopted parents Alma and Bob. Alma’s love (with Bob’s support) is the miracle that changed Louie’s life. That first year she stayed with him while he had colostomy surgery, PE tubes placed in his ears and a feeding tube inserted in his abdomen. Alma took time to study about food. She knows how much protein and vegetable, fruit and grain that she feeds to Louie. She knows which foods have incomplete porteins that his body can digest and which have incomplete proteins he has to avoid. She knows to the gram how much protein he eats in a day. Alma provided the tough love needed to teach Louie to crawl, then walk. She listened to him cry to be picked up while she waited for him to move toward her. She understood how much it hurt him to use muscles he had never used before. She also understood why it was important for him to learn to use those muscles. Alma learned to know the early signs when Louie is developing an infection or other illness. Treatment is now started early, allowing him to be treated at home and not in the hospital. As foster parents, Alma and Bob were willing to provide Louie with the special care he needed. They loved him as if he was one of their own. As his love grew, they knew that God had given him to them. When he was 5 years old, their love was strong enough to adopt a “special needs” child. Today Louie enjoys life when he is healthy, but there are many days when he is not. He still has ear and sinus infections, that are becoming more frequent. His white cell count drops way below normal when he is sick. The list of drugs that no longer work to treat his infections grows longer. Providing him with adequate nutrition continues to be a challenge. When he is not feeling well, the only food he tolerates is provided by his formula which is fed through his feeding tube. Louie’s blood tests are discouraging. Many factors, such as the white blood cell count, are too low. Other factors, such as the amount of propionic acid in his system, are too high. Equally of concern are the medical problems that can affect Louie’s quality of life — his ability to do the things he loves. Although he can walk, his bones are fragile and break easily. He wears orthotic supports in his shoes to support his ankles and to lessen the chance that he will fall and break a bone. He is losing his hearing. (This is not a typical symptom of pa). He now has to press his ear next to a speaker to hear the music he loves. Louie squints when he is looking at something that interest him. Alma worries that Louie will lose his eye sight next. Alma and Bob know that the miracle that kept Louie alive for the last ten years may not last much longer. He has lived longer than many kids with pa. Althought there is no cure for the disease, Louie is proof that proper diet and medical care can make a difference in the lives of these children. It can give them quality of life — days when they can laugh and play — days when they can enjoy life. Louie passed away on November 8, 2014. He lived to be 20 years old and is now running and leaping and praising God and we look forward to seeing him again with his body without any medical problems. |
Cadence
| Histórias de família |
Cadence “Cady” P – June 15, 1996- January 31, 2017 
 My Cadence doce nasceu no sábado, June 15, 1996 at 12:39 SOU. Foi uma longa, trabalho duro para nós dois, e ela teve um pouco de dificuldade em transição. Ela foi enviada para o hospital de WVU Crianças nessas primeiras horas, para observação, e voltou para casa para mim (ainda se recuperando do cesariana que tem ela aqui) alguns dias depois. Eu não consegui segurar esta criança de olhos azuis preciosa até que ela estava 4 days old, mas uma vez eu fiz, Jurei nada nos separar novamente. Duas semanas depois, PA elevou sua cabeça feia e enviou Cadence volta para WVU para 32 days. Estes foram angustiante vezes, ninguém cuidando de Cady nunca tinha visto nada parecido, e foi um tempo muito longo antes de nós percebeu o que estávamos lidando com. Eu tinha acabado de se formar com graus duplos da faculdade, literalmente, duas semanas antes Cady nasceu, e minha força passou a ser apenas em química orgânica. A curva de aprendizagem cuidar de Cady e compreender sua doença era íngreme, mas a minha experiência me permitiu compreender profundamente e assumir seus cuidados. Ao longo dos anos, apesar PA, Cadence teve uma vida muito plena e feliz. Eu me recusei a deixar que esse monstro roubar um segundo de nossas vidas e estava determinado a dar Cady tudo ao meu alcance para garantir uma vida maravilhosa para ela. Ela gostava de viajar, ela tem sido literalmente da Costa Leste à Costa Oeste dos Estados Unidos. Ela tinha mais amigos do que pode ser contado. Ela riu e jogou todos os minutos de vigília da sua vida. Ela estava tão cheia de alegria e riso. Durante a última semana de janeiro, barriga de Cadence começou a doer e ela teve problemas ter evacuações. Íleo era comum para Cady e nós tínhamos resistiu vários nos últimos anos. Ela estava administrando sábado, mas algo mudou domingo. Sua dor tornou-se mais perturbador para ela, e ela pediu para ir ao hospital. Ela sempre sabia quando era hora. Uma vez no local, ER, íleo foi visto em raio X e um tubo NG foi colocado para aliviar a pressão em seu estômago. Ela foi imediatamente aliviado, e foi mais uma vez sorrindo e feliz. Ela foi carregado em uma ambulância para o transporte de WVU para observação. Essa foi a última vez que veria seu sorriso.
 Duas horas depois, à chegada ao WVU, Cadence caiu e teve que ser levado às pressas para uma cirurgia de emergência. Cirurgiões não descobriu um íleo, mas um volvulous, onde as voltas intestinais e corta o fornecimento de sangue ao intestino. sem sangue, seu intestino começaram a morrer, e cirurgiões removido 8-10 polegadas de intestino tentando salvá-la. Ao longo das próximas horas, era tocar e ir, mas Cadence foi tão forte, ela realmente estava conseguindo ficar melhor. No final, contudo, a sepse provou ser demais, ela nunca recuperou a sua pressão arterial, e que permitem a uma maior morte de seu intestino. Nos foi dada a opção de parar estas medidas extraordinárias e dar-lhe uma passagem pacífica. Enquanto eu estava ao pé da cama de Cady, esfregando os pés (porque isso é tudo que ela sempre quis quando ela não se sentir bem), o resto do mundo escapuliu e foi mais uma vez apenas ela e eu. Fechei os olhos enquanto eu segurava seus pés e ouviu seu coração dizer ao meu coração, “Não, Mommy. Eu só quero jogar. Eu não quero mais fazer isso.” E entao, como o último ato como seu defensor, como seu protetor e mãe, Eu dei a ela o que ela queria, e devolveu-à seu Criador. Paramos a pinga e em apenas alguns minutos, seu coração parou. At 3:35 pm na terça-feira, January 31, 2017, meu doce Cadence jogou os braços ao redor do pescoço dela do Criador e riu com alegria absoluta. Sem mais G-tubos, não mais náuseas, não mais dores de barriga, não mais fadiga. Cadence agora só sabe alegria e meu coração canta a conhecer este. Nunca fiz nada tão grande a ponto de merecer o dom que Deus deu em mim, dando-lhe para me. Ela foi uma bênção do início ao fim, e continua a ser assim. ————————————————————————————————————————–
PAF Fall 2016 Boletim informativo
Não tenho a certeza por onde começar com esta atualização, parece que Cady
tem sido em torno de sempre,
 que esta vida vem acontecendo desde o início dos tempos, e eu ainda não posso acreditar que eu sou 43 e Cady atingiu 20 anos.. Back in 1996 quando ela nasceu, Foi-me dito que ela não veria dois meses, muito menos 20 years. Aqueles tempos, vívida como eles são, parece tão distante. E ainda, como poderia duas décadas se passaram?Para aqueles de vocês de novo para o PAF (pelo menos desde a nossa última atualização) Eu só vou recapitular desde o início. Cadence nasceu em junho 15, 1996 em um pequeno hospital aqui em WV norte. Tudo parecia bem as primeiras duas semanas, até que um dia Cady não acordaria para mim. Corri-a para o ER local e as coisas só se tornaram mais graves a partir daí. Ela foi enviada para o Hospital WVU Crianças, mas com um aviso muito claro que ela não iria fazer a hora e meia de viagem. Bem, ela fez, mas as coisas continuaram a ser muito ruim por um tempo. Naquele verão passamos 32 dias a Crianças, grande parte desse tempo estar em uma corda bamba de saber se ela tinha que fazer isso para ver outro dia. A dela era o primeiro caso deste tipo que tinham visto no WVU, e a equipe médica não tinha retirado todas as paradas para mantê-la viva. After 32 days, sabíamos o estádio estávamos em, se não qual a doença estávamos lidando com, e ela estava estável o suficiente para voltar para casa. Durante seu tempo àqueles 32 days, fibroblastos foram cultivadas e enviadas para ensaio. O resultado veio após Cady estava em casa cerca de duas semanas.. Ela tinha Propionic Acidemia. Ela foi a primeira criança que já nasceu em WV para sobreviver ao diagnóstico. Até hoje, 20 years later, ela ainda é o único sobrevivente nascido aqui.
As coisas eram um bocado woogy para os dois primeiros anos, mas ela estabilizada e nós levou uma vida bastante monótona até que ela estava 12 years old. Então, no verão de 2008, ela tornou-se doente e as regras pareceu mudar. Não tínhamos idéia de por que ela manteve descompensador. -se
 ok o que parecia ser para sempre tentando descobrir como tratar estes descompensações. Durante o inverno de 2009, ela espiral tão mal que ele realmente parecia que ia perdê-la. Ela fez isso através desse episódio, mas perdeu a maioria de sua audiência para os balanços eletrolíticos selvagens e química do sangue louco. Finalmente, seu especialista GI teve sua começou em um regime flagyl e que parecia ajudar. Isso não impediu as descompensações, mas fez parecem para combatê-los um pouco para trás.Em 2012, Cady se tornou Infantil Champion Miracle Network criança que representa o estado de West Virginia. Foi um ano ocupado, com muitos altos e baixos. Esse foi o ano em que ela se virou 16, e também o tempo que os médicos decidiram olhar para o seu crescimento. Eles fizeram um estudo idade óssea e, 16 years old, ossos de Cady foram envelhecidas a 144 months (exactly 12 years). Suas placas ainda não tinha fechado, e houve alguma discussão sobre colocá-la sobre o hormônio do crescimento para obter maior crescimento fora de seu antes que eles fundida. Nós tentou fazê-lo, e ela absolutamente floresceu. A reacção foi imediata e dramática. Seu apetite aumentou, Ela tinha mais energia, melhor tônus muscular.. parecia hormona de crescimento era uma droga maravilha para ela. Mas ela levou a ele um pouco bem demais e inchou seu cérebro em uma condição chamada cerebrii pseudotumor. A pressão no seu crânio estava esmagando o seu nervo óptico, ameaçando cegá-la. Eu não podia suportar a ideia de que.. esta doença foi pegar meu bebê para além, primeiro sua audição, agora sua visão. Paramos o hormônio do crescimento e colocá-la na UTI. Ela teve que ser iniciado em Diamox, que é um diurético cerebral. O problema com Diamox é que ela provoca hiperamonemia e bicarbonato de desperdício ao nível dos rins (todos sabem o que isso significa.. alta amônia e pH baixo. yay, exatamente o que precisamos!) Era uma dança com o diabo, equilibrar a necessidade de obter rapidamente o inchaço em seu cérebro contra causando uma crise metabólica. Fortunately, era uma dança que nós ganhamos. Não mais hormônio de crescimento para Cady. Sempre. Mas ela manteve a visão intacta e não sofreu muito mais do que um soluço metabólica.
Nesse mesmo Outono, ela ganhou Baile Princesa, votou por sua turma do segundo ano. Seus colegas de classe tinha crescido com ela desde o momento em que todos eram quatro anos de idade. Eles gostam muito e muito protetor de Cady. Ela venceu por decisão unânime.
Os últimos anos, até este passado final da Primavera, Cady continuou a ser instável. Eu tentei coisas diferentes com a sua dieta, e que iria trabalhar por um tempo, mas nós sempre acabam volta em uma praça. Começamos alternando terapia flagyl com Augmentin, que também parecia ajudar. Eu nunca fui um fã de lhe dar flagyl o tempo todo, devido à sua caixa preta advertência eo fato de que eu gostaria de descobrir por que ela está descompensador e pará-lo, em vez de apenas tentar tratá-lo o tempo todo. Parece que eu finalmente atingido na a combinação certa, para Cady, finalmente. Cady tinham sido alimentados por via oral durante anos, mas à luz do fato de que ela estava na bomba com seus descompensações sobre o quanto ela estava fora, Eu decidi colocá-la na bomba exclusiva e dar-lhe um descanso sistema. Eu também poderia encontrar nada, mas teorias não comprovadas sobre o que estava acontecendo em seu intestino, fazendo com que estas cascatas tão freqüentemente, mas o que eu achei foi que os sintomas dela parecia ser mais consistente com o desequilíbrio da flora intestinal em relação sobre o crescimento. Eu mudei o regime complementar de que ela tinha sido há anos e começou a usar ID Vida, que utiliza um especializado, avaliação de saúde individualizado para gerar uma recomendação personalizada. Havia probióticos em sua recomendação, algo que os médicos não queria que ela no passado. Estes suplementos são também de qualidade farmacêutica, Ao contrário do desregulada, suplementos não verificados nas prateleiras das lojas em todos os lugares. So, I levou o mergulho e iniciou com a nova suplementação. Tudo o que posso dizer é, UAU. Ela é estável novamente, happy, crescendo como uma erva daninha e o mais saudável ela esteve em uma década.
Ela também participou do baile este ano, seu ano sênior. Ela foi mais uma vez o queridinho de seus colegas’ olho, como eles votaram ela Prom Queen. Um par de semanas mais tarde, e em desafio a todos os incidentes estranho contra ela quando ela tinha duas semanas de idade, ela se formou no colegial.. Com honras.
Eu não posso transmitir como muito orgulhoso Eu sou dela, de como abençoado eu sinto ter caminhado esta viagem com ela, nem como humilhado Eu sou o que foi escolhido para ser essa mãe muito especial da criança. Ela me faz orgulhoso cada dia. – Leslie
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Maren S.
Maren S.
Hi, I am Honey. My husband is Scott. We have a 6 year old son, Lyric, and a
new baby girl, Maren. Maren was born on February 13, 2012. She weighed 8 pounds and 6 1/2 ounces. Twelve days after having taken Maren home, on a Saturday, and while at our son’s friend’s birthday party, we received an urgent call from a doctor asking about Maren’s wellbeing. We then learned she had an abnormal result on a newborn screening, elevated C3, which could indicate a metabolic disorder. A couple of days later, we received a call from a genetic counselor from Denver Children’s Hospital who informed us that Maren was diagnosed with Propionic Acidemia. Maren shows no signs of her illness. She did not “crash” in the hospital and has not since. She is a month old now. Maren’s little body was fed for almost 15 days a typical newborn diet of breast milk and formula. She had no abnormalities in her urine while having this. We feel so lucky she was able to hold her own. She now has a team of doctors and a special formula that includes carnitine as well. Needless to say, as a family, we are devastated. We are slowly coming to grips with our new reality. She is a precious little girl and naturally we fear what’s to come. We are still learning about PA. Looking at Maren one would never guess what’s going on in her fragile little body. She appears to be just fine. As many other “seasoned” PA parents probably understand, we are in a pretty dark place having just been dealt this blow. We are scared, overwhelmed and shocked slowly making our way towards acceptance and looking for the strength to persevere and smile while doing it. It feels like an impossibilty right now. We are new to this community. We are willing to share our story and to hear from others.
Atualizar: 5/2012
Maren is now almost 3 months old. So far, so good is what I have to report. Maren has been doing wonderfully. We have made friends in other PA families since her diagnosis which has proven to be a blessing. Recently Maren had a diet change which included adding a large amount of protein back into her baby formula. This was scary, but everything is okay so far. Labs showed that Maren was severely low in 2 amino acids and just fine with the other 2. We struggle with her lab draws since she is so little and finding a vein seems to be quite a challenge. We have learned as a family and through the support of others to take each day as it comes. Learning to keep our fear in check is an ongoing lesson though. Doctors suspect that Maren has a “mild” form of PA. But, that is always prefaced with “only time will tell.” Maren is a sweet, happy, and strong baby!
Jenna Lynn
Jenna Lynn D.
Jenna attends MacKenzie Elementary school, Grade 6 in an inclusion class. She is on a
modified program, but is included in the classroom activities. She participates in science projects, class presentations and is not afraid to speak in front of the class. Jenna has learned to write (with adult prompting the letters) and is still struggling with reading. She had a socio-educational assessment that showed she is weak in both long and short-term memory functions, which explains why she struggles with academics. On the positive side, Jenna is very good at reasoning. If I ask her to play with her brother, she will give plenty of excuses to avoid it. A parent would normally complain of this behaviour, but we are thrilled that our daughter has the mental capacity to make an excuse.
Metabolically (and medically), Jenna has been fairly stable (touch wood). She is on high dosage of Carnitine, which gives her a “fishy” odour. She is showing interest in some foods such as hash browns, jell-o or strawberries; so we encourage it, although she only takes very little by mouth. She is still predominantly g-tube fed throughout the day (bolus fed during the day and continuous feeding at night). She recently stopped wearing diapers at night! We are working on her self-help skills and she is very eager to learn. Last year, she was started on the daily injection of Nutropin for growth hormone therapy as she is quite short (less than 5th percentile for her age). We are hoping that the growth hormone will help with her height, as well as increase her low-muscle tone.
Jenna is 11 years old, but is developmentally at age 6 or 7. She is the oldest child of 4 and has filled her role of big sister very well. She is polite, obedient, kind-hearted and an absolute delight to talk to. She is growing up so fast and developing into such a beautiful girl; we couldn’t be more proud of her accomplishments. In retrospect, we were given a very bleak future with our special needs daughter, but she has exceeded everyone’s expectations and continues to surprise us all with her amazing personality.
update 9/1/2018
Jenna is now an adult. She is turning 20 on November 18th! She graduated high-school life skills and is transitioned to a program called Gateway To Adulthood (GTA). Jenna’s metabolic status has been stable. Contudo, last year when Jenna turned 19 she suddenly had her first seizure. Foi uma época assustadora para nós, pois não entendemos por que ela desenvolveu epilepsia,,en,Isso estava acontecendo com frequência,,en,Com uma crise metabólica,,en,nós sabíamos o nosso protocolo,,en,Ainda,,en,com convulsões nós tínhamos que estar alertas e constantemente na presença de Jenna,,en,como poderia acontecer a qualquer momento,,en,Como acontece com qualquer adolescente "normal",,en,Jenna está ansiosa por sua independência e busca o amor de um menino,,en,Ela admite ser uma romântica e quer que seu príncipe encantado venha um dia e a varre fora de seus pés,,en,Jenna é bem fashionista,,en,também,,en,Ela quer,,en,um dia,,en,começar sua própria linha de roupas que ela projetou,,en,No tempo livre dela,,en,ela gosta de criar histórias,,en,Histórias de amor,,en,para ser exato,,en,Ela vai pedir a seus amigos que representem sua história,,en,Como um diretor chefe,,en,Jenna sabe o que quer e diz a todos os seus rolos,,en. It was happening often. With a metabolic crisis, we knew our protocol. Yet, with seizures we had to be alert and constantly in Jenna’s presence, as it could happen at any time.
As with any “normal” teen, Jenna is longing for her independence and seeks the love of a boy. She admits to being a romantic and wants her prince charming to come one day and sweep her off her feet! Jenna is quite the fashionista, too. She wants to (one day) start her own clothing line that she designed. In her free time, she likes to create stories: Love stories, to be exact. She will ask her friends to act out her story. Like a boss director, Jenna knows what she wants and tells everyone their rolls! Estamos extremamente orgulhosos da nossa filha,,en,Uma vez que um bebê pensamos que não veríamos viver além da idade de,,en,agora é um adulto próspero e vive uma bela vida,,en,Ajude-nos a alcançar nosso objetivo de aumentar,,en,Abaixo estão os detalhes do ano anterior,,en,angariação de fundos,,en,resultados,,en,Este ano marca o,,en,ano da campanha da família DELIMA em memória de Lauren,,en,a família DELIMA,,en,Delima Page,,en. Once a baby we thought we would not see to live past age of 3, is now a thriving adult and living a beautiful life.
Jordan F.
Jordan F. (Born on January 28th, 2000 Aprovada em 26 de junho, 2016) 
It is with deep sadness that we share the passing of our beloved son, Jordan. Palavras não podem expressar a perda insuportável nos sentimos e somos tão gratos a todos os nossos família e amigos para ser solidário durante este tempo difícil. Temos ouvido histórias sobre Jordan de todos que ele tocou e recebeu cartas de colegas que estavam fora da cidade falando sobre como ele os ensinou sobre o amor incondicional e como ele mudou suas vidas. Na Jordânia de curta 16 years, Jordan impactado mais pessoas do que a maioria de nós na vida. Jordan adorava jogar futebol, boxing, basquete, bowling and kickball with his buddies. Jordan loved his electronics and if possible would have an ipod, an ipad, a kindle and the tv on at the same time. Jordan also loved having family and friends sing “on demand” his favorite songs. Perhaps, most of all, I will miss hugs and cuddling.
Jordan was a warrior in every sense. Jordan fought his illness until he could fight no more. He taught all of us so much. Jordan will always be in our hearts, our minds, and our souls.
Jordan inspired me to start PAF to find better treatments and a cure. In lieu of flowers, we have requested donations to Propionic Acidemia Foundation to continue the fight. Feel free to contact us any time – Love, Jill, Steve and Ryan
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Wow, time flies. Jordan é 16 years old. Ele é um estudante de segundo ano na escola. Na primavera passada, ele foi hospitalizado duas vezes – uma vez com pancreatite e uma vez para emissão de estômago desconhecido, but other than that has been doing well. Ele tem um dispositivo de comunicação chamado de NovaChat 7 which he is learning to use. He often says “I feel happy.” with his device. He continues to make slow progress with vocalizations and word approximations and can identify number 1-50 and is learning how to read. Jordan’s favorite activities involve “buddies” (typically developing peers) and he enjoys soccer, boxing, e kickball, além de seu programa de amigos do ensino médio. He has a 1:1 nurse and aide at school.
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Jordan is now 12 1/2 years old. Ele está no 7º ano na nossa escola média local. He uses a Dynavox V to help him communicate and is starting to use some word approximations.
He loves his Ipad – especially golf, bowling and Netflix. Jordan participates in extracurricular activities including bowling, kickboxing, soccer and music. He is a very happy child. He is now singing along to Cyberchase – his new favorite (yes, he still likes Barney, Blues Clues, Dragon Tales and Arthur). – 9/2012
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Hi!
My brother, Jordan, is 9 years old and has early onset Propionic Acidemia. 
We live in Highland Park, Illinois. He likes to play chase with me, play with his Video Now Jr. and swing on the swing in our basement. Jordan doesn’t know how to talk yet and I worry about what kind of job he will be able to get when he grows up. He uses a computer with a touch screen to communicate.
Jordan is in 3rd grade and goes to a special education school. I wish he was at school with me, but our school doesn’t have a special education classroom for Jordan. I also worry about where Jordan is going to live when he grows up, but my mom assures me that he will have choices. I love my brother very much and when I grow up I will try and help find a cure. I am 12 and would love to talk with other kids that have sisters or brothers with PA.
Written by Ryan, Jordan’s big brother