| 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!!!! |
Archives de catégorie: Nouvelles & Annonces
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” et “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
| Histoires de famille |
Cadence “Cady” P – June 15, 1996- January 31, 2017 
 My sweet Cadence was born on Saturday, June 15, 1996 at 12:39 AM. It was a long, hard labor for both of us, and she had a little trouble transitioning. She was sent to WVU Children’s hospital in those first hours, for observation, and came back home to me (still recovering from the cesarean that got her here) a few days later. I did not get to hold this precious blue eyed child until she was 4 days old, but once I did, I vowed nothing would separate us again. Two weeks later, PA reared its ugly head and sent Cadence back to WVU for 32 days. These were harrowing times, no one caring for Cady had ever seen anything like it, and it was a very long time before we realized what we were dealing with. I had just graduated with dual degrees from college literally two weeks before Cady was born, and my strength just happened to be in organic chemistry. The learning curve caring for Cady and understanding her disease was steep, but my background allowed me to understand it deeply and assume her care. Over the years, despite PA, Cadence had a very full and happy life. I refused to let this monster steal a second of our lives and was determined to give Cady everything within my power to ensure a wonderful life for her. She loved to travel, she has literally been from the East Coast to the West Coast of the United States. She had more friends than can be counted. She laughed and played every waking minute of her life. She was so full of joy and laughter. Over the last weekend of January, Cadence’s belly began to hurt and she had trouble having bowel movements. Ileus was common for Cady and we’d weathered several in the last few years. She was managing Saturday, but something changed Sunday. Her pain became more distracting to her, and she asked to go to the hospital. She always knew when it was time. Once at the local ER, ileus was seen on xray and an NG tube was placed to relieve the pressure on her stomach. She was immediately relieved, and was once again smiling and happy. She was loaded into an ambulance for transport to WVU for observation. That was the last time I’d see her smile.
 Two hours later, upon arrival at WVU, Cadence crashed and had to be rushed to emergency surgery. Surgeons discovered not an ileus, but a volvulous, where the bowel twists and cuts off the blood supply to the gut. Without blood, her gut began to die off, and surgeons removed 8-10 inches of bowel trying to save her. Over the next few hours, it was touch and go, but Cadence was so strong, she actually was managing to get better. In the end, cependant, the sepsis proved to be too much, she never regained her blood pressure, and that let to further death of her gut. We were given the option to stop these extraordinary measures and give her a peaceful passing. As I stood at the foot of Cady’s bed, rubbing her feet (because that’s all she ever wanted when she didn’t feel good), the rest of the world slipped away and it was once again just she and I. I closed my eyes as I held her feet and listened to her heart tell my heart, “Aucun, Mommy. I just want to play. I don’t want to do this anymore.” And so, as the last act as her advocate, as her protector and mother, I gave her what she wanted, and returned her to her Creator. We stopped the drips and in just a few minutes, her heart stopped. At 3:35 pm on Tuesday, January 31, 2017, my sweet Cadence threw her arms around her Creator’s neck and laughed in utter joy. No more g-tubes, no more nausea, no more belly aches, no more fatigue. Cadence now only knows joy and my heart sings to know this. Je ne ai jamais rien si grand pour mériter le don que Dieu m'a accordé en lui donnant à moi,,en,Elle était une bénédiction de début à la fin,,en. She was a blessing from beginning to end, and continues to be so. ————————————————————————————————————————–
PAF Fall 2016 Bulletin
Je ne sais pas où commencer avec cette mise à jour, il semble que Cady
a été autour pour toujours,
 que cette vie a été en cours depuis le début du temps, et pourtant je ne peux pas croire que je suis 43 et Cady a frappé 20 ans.. Retour en 1996 quand elle est née, On m'a dit qu'elle ne voulait pas voir deux mois, laisser seul 20 years. Ces moments, vive comme ils sont, semblent si loin. Et encore, comment deux décennies auraient pu passer?Pour ceux d'entre vous nouveau dans le PAF (au moins depuis notre dernière mise à jour) Je vais récapituler depuis le début. Cadence est né le Juin 15, 1996 dans un petit hôpital ici à WV nord. Tout semblait bien les deux premières semaines, jusqu'à ce qu'un jour Cady ne se réveille pas pour moi. Je lui ai précipité dans la salle d'urgence locale et les choses ne devenais plus graves à partir de là. Elle a été envoyée à l'hôpital de WVU enfants, mais avec un avertissement assez clair qu'elle ne ferait pas l'heure et demi voyage. bien, elle l'a fait, mais les choses ont continué à être assez mauvais pendant un certain temps. Cet été nous avons passé 32 jours à l'enfance, une grande partie de ce moment-là d'être sur une corde raide de savoir si elle ferait pour voir un autre jour. Le sien était le premier cas du genre qu'ils avaient vu à WVU, et le personnel médical, il avait sorti tous les arrêts de la garder en vie. After 32 days, nous savions ce stade, nous étions dans, sinon quelle maladie nous avions affaire à, et elle était suffisamment stable pour revenir à la maison. Pendant son temps ceux 32 days, fibroblastes ont été cultivés et renvoyés pour le dosage. Le résultat est revenu après Cady était à la maison environ deux semaines.. Elle avait acidémie propionique. Elle a été le premier enfant jamais né en WV pour survivre au diagnostic. À ce jour, 20 years later, elle est toujours le seul survivant né ici.
Les choses étaient un peu Woogy pour les deux premières années, mais elle est stabilisée et nous avons mené une vie assez calme jusqu'à ce qu'elle était 12 years old. Puis à l'été 2008, elle est devenue malade et les règles semblait changer. Nous ne savions pas pourquoi elle a gardé décompensation. Il à
 ok ce qui semblait être toujours figurer sur la façon de traiter ces décompensations. Pendant l'hiver 2009, elle en spirale si mal que ça ressemblait vraiment que nous avions la perdre. Elle l'a fait à travers cet épisode, mais il a perdu la majeure partie de son audition aux sautes d'électrolytes sauvages et la chimie du sang fou. finalement, son spécialiste de la GI a obtenu son commencé sur un régime de flagyl et qui semblait aider. Cela n'a pas empêché les décompensations, mais il ne semble pour les combattre un peu en arrière.En 2012, Cady est devenu représentant l'état de West Virginia Miracle Network Champion enfants des enfants. Ce fut une année bien remplie, avec des hauts et des bas. Ce fut l'année elle a tourné 16, et aussi le temps ses médecins ont décidé de la regarder la croissance. Ils ont fait une étude de l'âge osseux et au 16 years old, Les os de Cady étaient âgés à 144 months (exactly 12 years). Ses plaques avaient pas encore fermé, et il y avait une discussion à propos de la mettre sur l'hormone de croissance pour obtenir plus de croissance hors d'elle avant de fusionner. Nous avons essayé, et elle absolument prospéré. La réaction a été immédiate et dramatique. Son appétit a augmenté, elle avait plus d'énergie, meilleur tonus musculaire.. il semblait hormone de croissance était un médicament miracle pour elle. Mais elle a pris à elle un peu trop bien et il gonflait son cerveau dans un état appelé pseudotumor cerebrii. La pression dans son crâne écrasait son nerf optique, menaçant de l'aveugler. Je ne pouvais pas supporter l'idée de cela.. cette maladie a été ramasser mon bébé en dehors, d'abord son audition, maintenant sa vue. Nous nous sommes arrêtés l'hormone de croissance et la mettre dans l'unité de soins intensifs. Elle a dû être commencé sur Diamox, qui est un diurétique cérébral. Le problème avec Diamox est qu'il provoque l'hyperammoniémie et de bicarbonate cachexie au niveau des reins (vous savez tous ce que cela signifie.. haute ammoniac et à faible pH. Yay, tout ce que nous avons besoin!) Ce fut une danse avec le diable, équilibre entre la nécessité d'obtenir rapidement l'enflure dans son cerveau contre provoquant une crise métabolique. Fortunately, il était une danse que nous avons gagné. Pas plus d'hormone de croissance pour Cady. Déjà. Mais elle a gardé sa vue intacte et n'a pas souffert beaucoup plus que un hoquet métabolique.
Ce même automne, elle a remporté Homecoming Princesse, voté par sa classe de deuxième année. Ses camarades de classe avaient grandi avec elle depuis le moment où ils étaient tous âgés de quatre années. Ils sont très friands et très protecteur de Cady. Elle a gagné par décision unanime.
Ces dernières années,, jusqu'à ce printemps tardif passé, Cady a continué à être instable. J'ai essayé différentes choses avec son régime alimentaire, et cela pourrait fonctionner pendant un certain temps, mais nous avions toujours finir par revenir à la case départ. Nous avons commencé en alternance la thérapie flagyl avec augmentin, qui semblait aussi pour aider. J'ai jamais été un fan de lui donner flagyl tout le temps, en raison de son avertissement de boîte noire et le fait que je voudrais comprendre pourquoi elle est décompensation et l'arrêter au lieu de simplement essayer de traiter tout le temps. Il semble que je l'ai enfin frappé sur le la bonne combinaison, pour Cady, au moins. Cady avait été nourri par voie orale pendant des années, mais à la lumière du fait qu'elle était sur la pompe avec ses décompensations environ autant qu'elle était hors, Je décidai de la mettre sur la pompe exclusivement et lui donner un repos système. Je pourrais aussi trouver rien d'autre que des théories non prouvées concernant ce qui se passait dans son intestin, l'origine de ces cascades si souvent, mais ce que je ne trouve est que ses symptômes semblaient être plus compatibles avec le déséquilibre de la flore intestinale contre plus de croissance. J'ai changé le régime de supplément qu'elle avait été pendant des années et a commencé à l'aide d'ID Vie, qui utilise une spécialisée, évaluation de la santé individualisé pour générer une recommandation personnalisée. Il y avait des probiotiques dans sa recommandation, quelque chose que ses médecins ne l'avaient pas voulu dans le passé. Ces suppléments sont également de qualité pharmaceutique, contrairement au non régulé, suppléments non vérifiées sur les tablettes des magasins partout. So, Je pris le plongeon et elle a commencé sur la nouvelle supplémentation. Tout ce que je peux dire est, SENSATIONNEL. Elle est à nouveau stable, happy, de plus en plus comme une mauvaise herbe et la plus saine qu'elle a été dans une décennie.
Elle a également assisté à un bal cette année, son année senior. Elle était une fois de plus le chouchou de ses camarades de classe’ œil, comme ils ont voté la Prom Queen. Quelques semaines plus tard, et au mépris de tous les prélevée impair contre elle quand elle avait deux semaines, elle a obtenu le lycée.. avec honneurs.
Je ne peux pas vous transmettre la façon dont je suis fier d'elle, de la façon dont je me sens bénie d'avoir parcouru ce voyage avec elle, ni comment je suis humilié d'avoir été choisi pour être cette mère très spéciale de l'enfant. Elle me rend fière chaque jour. – Leslie
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Maren S.
Maren S.
salut, 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.
Mettre à jour: 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! Elle a obtenu son diplôme en compétences de vie au lycée et est passée à un programme appelé Gateway To Adulthood.,en (GTA). Jenna’s metabolic status has been stable. Cependant, last year when Jenna turned 19 she suddenly had her first seizure. It was a scary time for us as we didn’t understand why she developed epilepsy. 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! We are extremely proud of our daughter. 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 Passé le 26 Juin, 2016) 
It is with deep sadness that we share the passing of our beloved son, Jordan. Les mots ne peuvent exprimer la perte insupportable nous nous sentons et nous sommes très reconnaissants à tous nos familles et amis pour être favorable pendant cette période difficile. Nous avons entendu des histoires sur la Jordanie de tous ceux qu'il a touché et a reçu des lettres de pairs qui étaient hors de la ville parlent de la façon dont il leur a parlé de l'amour inconditionnel et la façon dont il a changé leur vie. In Jordan’s short 16 years, 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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salut!
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