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Evan M. – aggiornato a novembre 2020 Evan is now 13 anni ed è venuto così tanto dal suo ultimo aggiornamento su 8 anni. Anche se il suo cibo non è buono e si rifiuta di mangiare per via orale, è prevalentemente alimentato tramite tubo tramite un tubo di alimentazione a pulsante Mic-key. Ha una miscela di Tentrini Energy Multi Fiber, SOS 25, MMA/PA Express 15 e Calogen per le calorie. Gli diamo boli durante il giorno e pompiamo 3 hours at night.
Thankfully, questa è l'unica cosa con cui è tornato indietro. È addestrato alla toilette (giorno & notte) da qualche anno e sta andando alla grande. Il suo discorso / comunicazione ha fatto passi da gigante & limiti e anche se non possiamo ancora avere una conversazione con lui, può esprimersi in modo abbastanza chiaro e comprende comandi e richieste. Ama aiutarmi a casa a fare piccoli lavori in casa.
Evan ama tutta la tecnologia, gli piace guardare la tv (i suoi preferiti al momento sono Friends, Due uomini e mezzo, programmi di cucina e cartoni animati) film, musica e balli. Ama gli animali e ha un fascino per i pinguini. Ama i libri e la lettura e adora giocare con il nostro cane Elmo. È un ragazzo sorridente che illumina ogni stanza e ha una risata così contagiosa. Ha un gusto per la vita come nessun altro e ama le persone e le persone lo amano. È sicuramente un intrattenitore.
Finché ha fatto strada, abbiamo ancora molta strada da fare. Mainly with his eating and he also currently has some mobility issues needing knee high AFO supports when walking. He is considered ‘severe’ con PA. La gravità è leggermente diminuita dopo il trapianto, ma non importa quanto bene possa essere ora, il futuro è sempre incerto con la PA, soprattutto ora con Covid. Attualmente sta studiando a casa e sta andando alla grande nonostante la mia apprensione. La sua salute rimarrà sempre la nostra priorità, il suo sviluppo può essere lavorato.
Evan M. – updated March 2015
The transplant wasnt a ‘cure’ but is a huge help in managing Evan’s condition and giving the best chance at living a normal life. He can tolerate alot more protein which in turn helps his development and generally makes him look healthier. He is in his 2nd year in the local special needs school and he absolutely loves it. He runs out to the bus in the morning and always has a smile on his face wen he gets off the bus when he gets home! He loves the attention and being with others his own age. His speech and communication is coming along although we still can’t converse with him and his eating is steadily improving. Although foods still have to be pureed, he is open to trying new things and experimenting and playing with food whereas before he showed absolutely no interest in food and mealtimes.
Not everyone agrees with our decision to go for a Liver Transplant but even though the 1st year was tough we don’t regret our decision. Our thinking was that if something happened during or after the transplant at least we are doing everything possible and in our power to give our child the best chance possible to have a normal life. Life with PA is so unpredictable. Sarah (Evans mam)
———————————————————– Evan is 4 and he was diagnosed with Propionic Acidemia when he was four days old. normal pregnancy, normal delivery and evan arrived a healthy 7lbs 11ounces three days early. On day 3 he was getting very lethargic, he wasnt feeding and was breathing funny from his nose, like he had a cold. He was brought to the Special Care Unit by a nurse and we were told he would be back up soon so we presumed it was just to be checked out. An hour later, he was on a ventilator as doctors were afraid he would stop breathing. A number of tests were done and doctors in Cork narrowed it down to a Metabolic Disorder but they were not the experts in this field, The Metabolic Center of Ireland is in Dublin so Evan was transferred up when he was 3 days old where they diagnosed him the day after. Evan was in the hospital for 3 months until well enough to return home. Since then he has been admitted to the local hospital a handful of times, for flus, bugs and infections but thankfully since birth he has had no major decompensation. He has a good enough appetite and drinks his XMTVI Maxamaid orally during the day and eats about 6 of his restricted 8 exchanges of protein orally, tuttavia, anything he does eat has to be liquidised with no lumps whatsoever. He also has a continued feed during the night through PEG Tube. We travel to his doctor in Dublin every 3 months for check ups, where they take blood and check his levels are normal, and we speak to dieticians etc. Evan is a wonderful, happy, sociable, and boisterous 4 year old , he struggles with speech and communication which can get him frustrated and he has regular speech therapy, physio and occupational therapy. Evan has been on a waiting list for an Auxiliary Liver Transplant for 7 months now. |
Evan is now 8 anni. He had a partial liver transplant in March 2012. Whilst the 1st years was very tough, unfortunately he was diagnosed 6 months after transplant with Lymphproliferative Disease. A type of Lymphoma brought on by the immunosuppressants needed to stop his body from rejecting his new liver. He needed a few months of chemotherapy but thankfully got the all clear from this a few months later. Since this however, Evan has come along so so much.
He is still tube fed most of the time via a mic-key button in his stomach. His feed consists of Energivits, Nutrini and MMA/PA Gel and all medications we give to him via this tube. So even though he still picks up every bug and infection going and does have long bouts out of school and the odd admission to our local hospital the future is looking bright for Evan. There is no doubt life is tough living with PA, we do our best by our children.