| 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 degrees, 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!!!! |
Arhiva Categorie: Știri & Anunțuri
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, Biotin, 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” și “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
| Familii Povestiri |
Cadence “Cady” P – June 15, 1996- January 31, 2017 
 Cadence meu dulce sa născut sâmbătă, June 15, 1996 at 12:39 A.M. A fost o lungă, munca grea pentru amândoi, și ea a avut o mică problemă la modificarea. Ea a fost trimis la spital pentru copii WVUs în acele prime ore, pentru observarea, și sa întors acasă la mine (recuperarea inca de cezariana pe care ea a ajuns aici) cateva zile mai tarziu. N-am apucat să dețină acest prețios copil cu ochi albastru până când ea a fost 4 days old, dar odată ce am făcut, Am jurat nimic nu ne-ar separa din nou. Două săptămâni mai târziu, PA a ridicat capul urât și trimis înapoi la Cadence WVUs pentru 32 days. Acestea au fost grapatul ori, nimeni nu grija pentru Cady a văzut vreodată așa ceva, și a fost foarte mult timp înainte de a ne-am dat seama ce avem de-a face cu. Am avut doar absolvit cu diplome duble de la colegiu literalmente cu două săptămâni înainte de nașterea lui Cady, și puterea mea sa întâmplat să fie în chimia organică. Curba de învățare grija pentru Cady si intelegerea bolii ei a fost abrupta, dar trecutul meu mi-a permis să-l înțeleagă profund și să își asume grija ei. De-a lungul anilor, în ciuda PA, Cadence a avut o viață foarte plin și fericit. Am refuzat să lase acest monstru fure un al doilea din viața noastră și a fost determinată pentru a da Cady totul în putință pentru a asigura o viață minunată pentru ea. Ea îi plăcea să călătorească, ea a fost literalmente de pe Coasta de Est pe Coasta de Vest a Statelor Unite ale Americii. Ea a avut mai mulți prieteni decât pot fi numărate. Ea a râs și a jucat fiecare minut starea de veghe a vieții ei. Ea a fost atât de plin de bucurie și de râs. De-a lungul ultimului week-end ianuarie, burta Cadence a început să se rănească și ea a avut probleme cu miscarile intestinului. Ileus a fost comună pentru Cady și ne-am rezistat mai multe în ultimii ani. Ea a fost de gestionare sâmbătă, dar ceva sa schimbat duminică. Durerea ei a devenit mai distrage atentia ei, și ea a cerut să meargă la spital. Ea a știut întotdeauna când a fost timp. O dată la ER locale, ileus a fost văzut pe xray și un tub NG a fost plasată pentru a diminua presiunea asupra stomacului. Ea a fost imediat eliberat, și a fost, din nou, zâmbind și fericit. Ea a fost încărcat într-o ambulanță pentru transport la WVUs pentru observarea. Asta a fost ultima dată când am vedea zâmbetul ei.
 Doua ore mai tarziu, la sosirea la WVUs, Cadence prăbușit și a trebuit să fie dus de urgenta la o intervenție chirurgicală de urgență. Chirurgii nu a descoperit un ileus, ci o volvulous, în cazul în care intorsaturi intestinului și taie alimentarea cu sange a intestinului. Fără sânge, gut ei a început să moară, și chirurgii eliminat 8-10 inch de intestinului încercând să o salveze. Pe parcursul următoarelor câteva ore, a fost tactil și du-te, dar Cadence a fost atât de puternic, De fapt, ea a fost de gestionare pentru a obține o mai bună. La sfarsit, totuși, sepsisul sa dovedit a fi prea mult, ea nu a recâștigat ei tensiunii arteriale, și care lasă la moarte în continuare a intestinului ei. Am fost dat posibilitatea de a opri aceste măsuri extraordinare si da-i o întâlnire liniștită. Așa cum am stat la picioarele patului lui Cady, frecarea picioarele ei (pentru că asta e tot ce a dorit, atunci când ea nu se simțea bine), restul lumii alunecat departe si a fost, din nou, doar eu și ea. Am închis ochii mei ca am ținut picioarele ei și a ascultat inima ei spun inima mea, “Nu, mami. Vreau doar să joace. Nu mai vreau să fac asta.” Așadar, ca ultimul act ca avocat ei, ca protector și mama ei, I-am dat ceea ce ea a vrut, și ea a revenit la Creatorul ei. Ne-am oprit prelinge și în doar câteva minute, inima ei sa oprit. At 3:35 pm marți, January 31, 2017, Cadence meu dulce a aruncat brațele în jurul gâtului Creatorului ei și a râs în bucurie totală. Nu au mai g tuburi, nu mai greață, nu mai multe dureri de burtă, nu mai oboseală. Cadence acum știe doar bucurie și inima mea cântă să știe acest lucru. N-am făcut nimic atât de mare încât merită darul pe care Dumnezeu mi-a dăruit dându-mi-. Ea a fost o binecuvântare de la început până la sfârșit, și continuă să fie atât de. ————————————————————————————————————————–
PAF Fall 2016 Newsletter
Nu sunt sigur de unde să înceapă cu această actualizare, se pare că Cady
a fost în jurul pentru totdeauna,
 că această viață a fost întâmplă de la începutul timpului, și totuși nu pot să cred că sunt 43 și Cady a lovit 20 varsta.. Înapoi în 1996 când ea a fost născut, Mi sa spus că nu se va vedea două luni, să nu mai vorbim 20 ani. acele vremuri, vii, deoarece acestea sunt, par a fi atât de departe. Si totusi, cum ar fi trecut de două decenii?Pentru aceia dintre dvs. nou la PAF (cel puțin de la ultima noastră actualizare) O să recapitulez doar de la început. Cadence a fost născut pe iunie 15, 1996 într-un spital mic aici, în nordul WV. Totul părea în regulă primele două săptămâni, până la o zi Cady nu ar trezi pentru mine. I-am repezit în ER locale și doar lucruri au devenit mai grave, de acolo. Ea a fost trimisă la Spitalul WVUs Copii, dar cu un avertisment destul de clar că ea nu ar face-o oră și jumătate de călătorie. Bine, ea a făcut, dar lucrurile au continuat să fie destul de rau pentru o vreme. În vara aceea ne-am petrecut 32 zile de la copii, o mare parte din acel moment fiind pe muchie de cuțit dacă ea ar face să vadă o altă zi. Al ei a fost primul caz de acest gen au mai văzut la WVUs, iar personalul medical nu a scos toate oprește pentru ao menține în viață. After 32 days, am știut ce ballpark am fost în, în cazul în care nu boala care avem de-a face cu, și ea a fost suficient de stabil pentru a veni acasă. În timpul ei cei 32 days, fibroblasti au fost crescute și trimis pentru analiză. Rezultatul s-au întors după Cady a fost acasă de aproximativ două săptămâni.. Ea a avut acidemia propionic. Ea a fost primul copil născut vreodată în WV pentru a supraviețui diagnosticului. Până azi, 20 years later, ea este încă singurul supraviețuitor născut aici.
Lucrurile erau cam woogy pentru primii doi ani, dar ea a stabilizat afară și ne-am dus o viață destul de lipsit de evenimente, până când ea a fost 12 years old. Apoi, în vara anului 2008, ea sa îmbolnăvit și regulile păreau să se schimbe. Nu am avut nici o idee de ce ea a păstrat decompensating. l
 ok ceea ce părea să fie pentru totdeauna imaginind cum să trateze aceste decompensari. În timpul iernii 2009, ea spiralate atât de rău încât părea într-adevăr ca și cum am pierdut-o. Ea a făcut prin acel episod, dar a pierdut cea mai mare parte auzul ei la leagăne electrolitice sălbatice și chimia de sânge nebun. In sfarsit, specialistul ei GI a fost ei a început într-un regim flagyl și care părea să ajute. Ea nu a oprit decompensari, dar părea să lupte cu ei un pic înapoi.În 2012, Cady a devenit reprezentand Miracle Network Copii Campion Copilului starea de Virginia de Vest. A fost un an aglomerat, cu multe suișuri și coborâșuri. Acesta a fost anul ea sa transformat 16, și, de asemenea, timpul de medicii ei au decis să se uite la ea o creștere. Ei au făcut un studiu și la vârsta osoasă 16 years old, oasele Cady au fost în vârstă de la 144 months (exactly 12 ani). Plăci ei nu au fost încă închise, și au existat unele discutii despre punerea ei pe hormon de creștere pentru a obține o creștere mai mare de ea înainte de a fuzionat. L-am încercat, și ea a înflorit absolut. Reacția a fost imediată și dramatică. apetitul ei a crescut, ea a avut mai multa energie, tonusul muscular mai bine.. parea hormon de crestere a fost un medicament minune pentru ea. Dar ea a luat la ea un pic prea bine și s-au umflat creierul ei într-o afecțiune numită cerebrii pseudotumora. Presiunea din craniul ei a fost de strivire nervul ei optic, amenințând să-i orbi. N-am putut suporta ideea asta.. aceasta boala a fost cules copilul meu în afară, prima audiere ei, acum ochii ei. Ne-am oprit hormonul de creștere și a pus-o in UTI. Ea a trebuit să fie pornit la Diamox, care este un diuretic cerebral. Problema cu Diamox este că provoacă hiperamoniemie și bicarb irosirea la nivelul rinichilor (știți cu toții ce înseamnă asta.. ridicat de amoniac și pH scăzut. ura, doar ceea ce avem nevoie!) A fost un dans cu diavolul, de echilibrare necesitatea de a obține rapid umflarea în creierul ei împotriva provocând o criză metabolică. Fortunately, a fost un dans pe care am câștigat. Nu mai hormon de creștere pentru Cady. Vreodată. Dar ea a păstrat intactă și ochii ei nu au suferit mult mai mult decât un sughiț metabolice.
În aceeași toamnă, ea a câștigat Homecoming Princess, votat de clasa ei al doilea de studentie. colegii ei au crescut cu ea, deoarece în momentul în care erau în vârstă de toți cei patru ani. Ele sunt foarte mândru și foarte protectoare de Cady. Ea a câștigat printr-o decizie unanimă.
În ultimii ani, până la această primăvară târziu rămas singur, Cady a continuat să fie instabilă. Am încercat diferite lucruri cu dieta ei, și că ar lucra pentru o vreme, dar vom ajunge mereu înapoi la pătrat. Am început să alternând terapia flagyl cu augmentin, care părea că, de asemenea, pentru a ajuta la. Nu am fost niciodată un fan de a da flagyl ei tot timpul, din cauza este caseta de avertizare negru și faptul că aș vrea să dau seama de ce e decompensating și opri în loc de doar încearcă să-l trateze tot timpul. Se pare că în cele din urmă l-am lovit pe combinația potrivită, pentru Cady, cel puțin. Cady au fost hrăniți pe cale orală, de ani de zile, dar, având în vedere faptul că ea a fost pe pompa cu decompensari ei la fel de mult ca și ea a fost oprit, Am decis să-i pună pe pompa în mod exclusiv și să dea sistemul ei o perioadă de odihnă. De asemenea, am putut găsi nimic altceva decât teorii nedovedite cu privire la ce se întâmplă în intestin ei, provocând aceste cascade atât de frecvent, dar ceea ce am găsit a fost că simptomele ei păreau să fie mai consistentă cu dezechilibre ale florei intestinale, comparativ cu o creștere de peste. Am schimbat regimul de supliment pe care ea ar fi fost de ani de zile și a început să folosească ID-ul Life, care utilizează un grup specializat, Evaluarea individualizat de sănătate pentru a genera o recomandare personalizată. Au existat probiotice in recomandarea ei, ceva ce doctorii ei nu au vrut-o în trecut. Aceste suplimente sunt, de asemenea, de grad farmaceutic, spre deosebire de nereglementat, Suplimente neconfirmate de pe rafturile magazinelor de pretutindeni. So, Am luat plonja și a început-o pe noua suplimentarea. Tot ce pot spune este, WOW. Ea este stabilă din nou, happy, în creștere ca o buruiană, iar cele mai sanatoase ea a fost într-un deceniu.
Ea a participat, de asemenea bal acest an, Senior an ei. Ea a fost încă o dată draga de colegii ei’ ochi, așa cum au votat-o regina balului. Câteva săptămâni mai târziu, și în ciuda oricărei percepute ciudat împotriva ei, atunci când ea a fost în vârstă de două săptămâni, a absolvit liceul.. cu onoruri.
Nu pot transmite cât de mândru sunt de ea, a modului în care binecuvântat mă simt ca a mers această călătorie cu ea, nici cum umilită sunt că am fost ales să fie această mamă foarte specială a copilului. Ea mă face mândru în fiecare zi. – 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.
Actualizați: 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 sau 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. Totuși, last year when Jenna turned 19 she suddenly had her first seizure. A fost un timp înfricoșător pentru noi, deoarece nu am înțeles de ce a dezvoltat epilepsia,,en,Se întâmplă des,,en,Cu o criză metabolică,,en,ne-am cunoscut protocolul,,en,Inca,,en,cu convulsii trebuia să fim atenți și în permanență în prezența Jennei,,en,așa cum se poate întâmpla în orice moment,,en,Ca și în cazul oricărui adolescent "normal",,en,Jenna își dorește independența și caută iubirea unui băiat,,en,Ea recunoaste ca este un romantic si isi doreste ca printesa ei fermecatoare sa vina intr-o zi si sa o tina de pe picioare,,en,Jenna este destul de fashionista,,en,de asemenea,,en,Ea vrea să,,en,intr-o zi,,en,începe propria linie de îmbrăcăminte pe care ea a proiectat-o,,en,In timpul ei liber,,en,îi place să creeze povesti,,en,Povesti de dragoste,,en,pentru a fi exact,,en,Îi va întreba pe prietenii săi să-și descopere povestea,,en,Ca un director șef,,en,Jenna știe ce dorește și le spune tuturor cântecele lor,,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! Suntem extrem de mândri de fiica noastră,,en,Odată ce un copil am crezut că nu vom vedea să trăim veacul trecut,,en,este acum un adult înfloritor și trăiește o viață frumoasă,,en,Ajutați-ne să atingem obiectivul nostru de creștere,,en,Mai jos sunt detalii despre anul precedent,,en,strângere de fonduri,,en,rezultate,,en,Anul acesta marchează,,en,anul campaniei familiei DELIMA în memoria lui Lauren,,en,familia 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 Passed on June 26th, 2016) 
It is with deep sadness that we share the passing of our beloved son, Jordan. Words cannot express the unbearable loss we feel and we are so thankful to all of our family and friends for being supportive during this difficult time. We have heard stories about Jordan from everyone he touched and received letters from peers that were out of town talking about how he taught them about unconditional love and how he changed their lives. In Jordan’s short 16 ani, Jordan impacted more people than most of us do in a lifetime. Jordan loved playing soccer, boxing, basketball, 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 is 16 years old. He is a sophomore in high school. Last spring he was hospitalized twice – once with pancreatitis and once for unknown stomach issue, but other than that has been doing well. He has a communication device called a 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, and kickball in addition to his high school buddies program. He has a 1:1 nurse and aide at school.
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Jordan is now 12 1/2 years old. He is in 7th grade at our local middle school. 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