Every day without the right equipment and therapy increases the risk of surgery for Alex.
Because he cannot stand or walk on his own, he has already developed hip dysplasia and is at high risk for major surgeries on his hips, spine, and other joints. Alex urgently needs specialized medical equipment, mobility supports, and therapies to protect his body, build strength, and delay or avoid surgery. Your support can help us raise the funds that will change the course of his future.
Hi,
We are Anca and Jesse, the proud parents of Alex, our tiny warrior and greatest teacher. Alex was born at just 27 weeks, fighting for his life from the very first breath. He was progressing as well as a fragile preemie could until, in his third week of life, he was given milk fortifiers. Almost immediately, everything changed. He became critically ill with necrotizing enterocolitis (NEC), a devastating condition where parts of a premature baby’s intestine begin to die, often leading to sepsis and long-term complications like short bowel syndrome and neurodevelopmental impairment.
Alex’s small intestine was dying, and he went into sepsis. The infection and inflammation ravaged his tiny body. He endured endless surgeries to remove damaged intestine and to save his life. Those days in the NICU were filled with monitors, ventilators, and the constant fear that we might lose him at any moment. While the surgeons and NICU team miraculously kept him here with us, the cost was enormous: Alex was left with severe brain damage, short gut syndrome, and a future filled with complex medical needs.
Today, Alex is a NEC survivor and a miracle, but he lives with severe cerebral palsy Level V GMFCS. This means he is completely dependent on others for mobility and daily care. He has epilepsy, ongoing seizures, significant motor impairments, and is G‑tube dependent due to his short gut, which makes feeding and nutrition a daily medical balancing act. Simple things other children take for granted—sitting up, taking a step, or saying a word—are monumental goals for him.
Despite everything he has endured, Alex is full of light. He recognizes our voices, responds to love, and has the most beautiful spark in his eyes. He is now able to tolerate sitting in his chair or in his gait trainer for short periods at the time. As his parents, we are determined to give him every possible chance to move, learn, and experience the world beyond hospital walls and therapy rooms. That is why we are humbly asking for your help.
Our family lives on a single income because Alex’s father stays home full‑time to care for him. As Alex’s needs grow, we’ve reached a point where we can no longer afford some of the therapies that are not covered by insurance, let alone life‑changing equipment like an exoskeleton, horse‑ride therapy devices, or a handicap‑accessible van.
That is why we are reaching out to kind‑hearted people who believe in helping others and supporting good causes—because with your help, Alex can have opportunities we simply cannot provide alone.
We are fundraising for several specialized tools and therapies that are not covered, or are only minimally covered, by insurance, but are proven to help children with cerebral palsy and complex medical needs:
Trexo robotic walker for home use or in clinic sessions not covered by insurance- cost $ 40,000: The Trexo is a pediatric robotic gait trainer that attaches to a gait trainer/walker and helps children get upright and take physiologically correct, repetitive steps, even if they cannot walk on their own. This kind of repetitive, supported walking can help improve strength, posture, and motor function by promoting neuroplasticity—essentially helping the brain and body learn better movement patterns over time. For Alex, this means a real chance to experience standing and stepping instead of being confined to a chair or bed.
MiraColt therapeutic riding simulator- cost $10,000: The MiraColt is a medical device that mimics the complex, three‑dimensional motion of a walking horse and is used as a form of hippotherapy for people with cerebral palsy. Research and clinical use show that this motion helps improve core and limb strength, posture, balance, and functional mobility, while also supporting speech, cognition, and even sleep quality. For Alex, this device could help calm his nervous system, build his trunk and pelvic control, and improve his ability to participate in everyday activities.
Accessible handicap van cost varies but aimed for used van - cost $35,000-65,000: Transporting a child who uses specialized equipment, has a G‑tube, and is medically fragile is not as simple as buckling a car seat. An accessible van with proper wheelchair and equipment access would allow us to get Alex safely to medical appointments, therapies, and community activities without risking injury or exhaustion for him or for us as his caregivers. It would give him a safer, more dignified way to leave the house and be part of the world.
Ongoing proven therapies and equipment: In addition to these large items, Alex needs continuous physical, occupational, and speech therapies tailored to children with severe cerebral palsy, as well as adaptive seating, standers, medical supplies, and communication supports. These therapies focus on improving his strength, comfort, ability to interact with his environment, and overall quality of life, but many of the most effective options come with significant out‑of‑pocket costs.
Proven therapies for cerebral palsy/brain injury such as DMI/MNRI/ABM- NOT covered by insurances but proven tools to drive neuroplasticity and reflex integration; DMI builds dynamic control, MNRI reprograms hypertonia for seizure calming and motor gains across limbs—critical where routine PT fails.
ABM -gentle, neurologically based movement lessons to enhance brain plasticity, improve body awareness and functional movement, support regulation and calming of the nervous system, and promote engagement, attention, and communication.
Every piece of this puzzle—Trexo, MiraColt, accessible transportation, and specialized therapies—offers Alex more than just “treatment.” They offer him comfort, movement, and the chance to engage with the world in ways his injured brain and fragile body otherwise would not allow. They also offer our family a bit of hope and a path forward, instead of feeling trapped by what he cannot do.
Thank you so much for taking the time to read Alex’s story and hold our family in your heart. Your donation, of any size, truly makes a difference—but if you cannot give, please consider sharing his story with others. Every share helps us reach one more person who might help Alex move, heal, and thrive.
Viitorul lui Alex depinde de intervenția noastră acum!
Fiecare zi fără echipamentele și terapiile potrivite îi crește riscul de a ajunge la intervenții chirurgicale majore.
Pentru că nu poate sta în picioare sau merge independent, Alex a dezvoltat deja displazie de șold și este expus unui risc ridicat de operații la nivelul șoldurilor, coloanei și altor articulații. Cu sprijinul potrivit acum, avem șansa să îi protejăm corpul, să îi dezvoltăm forța și să amânăm sau chiar să evităm aceste intervenții.
Bună,
Suntem Anca și Jesse, părinții mândri ai lui Alex — micul nostru luptător și cel mai mare profesor al nostru.
Alex s-a născut la doar 27 de săptămâni și a luptat pentru viața lui din prima clipă. În a treia săptămână de viață, după administrarea de fortifianți pentru lapte, a dezvoltat enterocolită necrozantă (NEC), o afecțiune devastatoare în care porțiuni din intestinul unui prematur încep să moară. Starea lui s-a agravat rapid, a intrat în sepsis și a trecut prin multiple intervenții chirurgicale pentru a-i salva viața.
Acele zile au fost pline de frică, incertitudine și decizii imposibile. Deși echipa medicală i-a salvat viața, Alex a rămas cu leziuni cerebrale severe, sindrom de intestin scurt și nevoi medicale complexe pe viață.
Astăzi, Alex este un miracol — un supraviețuitor NEC. Trăiește cu paralizie cerebrală severă (nivel GMFCS V), epilepsie și dificultăți motorii importante. Este complet dependent de noi pentru mobilitate și îngrijire zilnică și este hrănit prin gastrostomă (G-tube). Lucruri simple, precum a sta în șezut, a se ridica sau a face un pas, sunt pentru el provocări uriașe.
Și totuși, Alex este plin de lumină. Ne recunoaște vocile, răspunde la iubire și are o scânteie în privire care ne dă putere în fiecare zi. Acum poate tolera perioade scurte în scaun sau în cadrul de mers, iar fiecare mic progres înseamnă enorm pentru noi.
Ca părinți, suntem hotărâți să îi oferim toate șansele de a se mișca, de a învăța și de a experimenta lumea.
Dar nu putem face asta singuri.
Familia noastră trăiește dintr-un singur venit, deoarece tatăl lui Alex stă acasă cu normă întreagă pentru a-l îngriji. Pe măsură ce nevoile lui cresc, nu ne mai permitem terapiile esențiale și echipamentele care nu sunt acoperite de asigurare.
Strângem fonduri pentru echipamente și terapii care îi pot schimba viața:
Trexo – dispozitiv robotic de mers (40.000 $): un sistem pediatric care îl ajută pe Alex să stea în picioare și să facă pași susținuți, repetitivi, stimulând forța, postura și neuroplasticitatea.
MiraColt – simulator de hipoterapie (10.000 $): un dispozitiv care reproduce mișcarea tridimensională a mersului pe cal, ajutând la îmbunătățirea echilibrului, forței, posturii și reglării sistemului nervos.
Mașină adaptată pentru dizabilitate (35.000–65.000 $): transportul sigur al lui Alex și al echipamentelor medicale este esențial pentru accesul la terapii, controale și viața în comunitate.
Terapii și echipamente continue: kinetoterapie, terapie ocupațională, logopedie, dispozitive de poziționare, standere și sisteme de comunicare.
De asemenea, urmăm terapii specializate precum DMI, MNRI și ABM — metode orientate spre îmbunătățirea funcției neurologice, controlului motor și reglării sistemului nervos. Acestea nu sunt acoperite de asigurare, dar pot aduce progrese acolo unde terapiile clasice nu reușesc.
Fiecare dintre aceste resurse înseamnă mai mult decât tratament — înseamnă confort, mișcare și șansa de a interacționa cu lumea.
Sprijinul vostru poate schimba cursul vieții lui Alex.
Dacă puteți dona, vă suntem profund recunoscători. Dacă nu, vă rugăm să distribuiți povestea lui. Fiecare distribuire ne apropie de cineva care poate face o diferență.
Vă mulțumim că îl păstrați pe Alex în gândurile și inimile voastre.
Organizer
