ZA TIJIN KORAK / FOR TIA’S STEP

We are collecting donations for Tia Šeri for the surgical procedure Selective dorsal rhizotomy to be performed at St. Louis Children’s Hospital.

Tia is a very special 7-year-old girl who, as she develops, defies all prognosis.

She was born with a large brain tissue deficit and diagnoses, which have been multiplying with each new development phase (Status following perinatal ishaemic stroke left – porencephaly cyst FII 20 210; heterozygote for c. 97GA; left ACM hypoplasia; subluxatio coxae lat dex; CP – bilateral spastic GMFCS IV, BFMF 3B).

Yet still, she is today a very joyful and playful little being who keeps us happy with her smile every day, from morning to evening.

In cognitive and intellectual terms, Tia is just like any other child of her age, playful, eager to be among her kindergarten friends, currently more interested in letters and numbers, not letting the motor impairments, that prevent autonomous movement, stand in her way of achieving her goals.

Her development is a great mystery for us all who are committed to helping her get the best life possible.

Along the way we have come across many doctors, specialists, nurses, therapists, educators and good people at the Children’s Hospital Zagreb, Kindergarten Razlicak, and in particular Clinic Glavic, whose medical staff have been accompanying Tia on her way to independent life for five years with everyday therapy. They all deserve our deepest gratitude.

Since she has achieved “the impossible” so far, we are now off to new challenges.

The results of the preliminary examination performed by doctor Parka at St. Louis Children’s Hospital, a nationally recognized Center for Cerebral Palsy Spasticity, have confirmed that Tia is eligible for the surgical procedure Selective dorsal rhizotomy. (https://www.stlouischildrens.org/conditions-treatm...)

SDR is a spine surgery, which is, in layman’s terms, performed to reduce muscle hypertonia and spasticity, preventing normal leg movement, i.e. walking. It will be followed by orthopaedic surgery of the lower extremities ligaments and daily physical therapy, all at the hospital in St. Louis lasting 30-40 days.

For the last year, Tia has started using a walker, but due to excessive spasm she is not able to make steps. As she has now reached her maximum motor level, this surgery would help her, with continued neurorobotics-assisted therapeutic exercise at the Clinic Glavic, achieve her first autonomous steps and become more independent as next year she will start school.

The surgery is scheduled for March 2023, and the total amount payable 45 days before the scheduled date is USD 65,115.00 plus travel and lodging costs.

Please find attached the details of the giro account for making donation payments, the pricelist of the SDR surgery at St. Louis Children’s Hospital and a letter by doctor Park, who will perform the surgery, in which he describes the benefits of the procedure for Tia’s future motor development.

Thank you in advance.

Kind regards

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Prikupljamo donacije za potrebe operativnog zahvata Selective dorsal rhizotomy u bolnici Children’s Hospitalu St. Louis-u za Tiu Šeri.

Tia je jedna sasvim posebna sedmogodišnja djevojčica koja svojim razvojem prkosi svim prognozama.

Rođena je sa velikim deficitom moždanog tkiva i dijagnozama koje se gomilaju sa svakom novom razvojnom fazom (Stanje nakon ish prenatalnog cerebralovaskularnog infartkta lijevo – porencefalična cista FII 20 210; Heterozigot za c. 97GA; Hipoplazija lijeve ACM; Subluxatio coxae lat dex.; CP - bilateralno spastični oblik – GMFCS IV, BFMF 3B).

No unatoč tome, ona je danas veselo, razigrano malo biće koje nas uveseljava svojim osmijehom svaki dan, od jutra do večeri.

Kognitivno i intelektualno, Tia je baš kao i svako drugo dijete njenih godina, razigrana, željna društva prijatelja vrtićaraca, trenutno najviše zainteresirana za slova i brojeve i ne dozvoljava da joj motorička poteškoća, koja joj onemogućava samostalno kretanje, stoji na putu ka cilju.

Njen razvoj je velika enigma za sve nas koji smo odlučni u namjeri da joj omogućimo njen najbolji mogući život.

Na tom putu zahvalni smo svim doktorima, specijalistima, medicinskim sestrama, terapeutima, odgajateljima i nadasve dobrim ljudima u Klinici za dječje bolesti Zagreb, vrtiću Različak te posebice Poliklinici Glavić koja svakodnevnim terpijama prati Tiu na njenom putu ka samostalnom životu već punih pet godina.

Budući da je već do sada postigla ‘nemoguće’ jurimo ka novim izazovima.

Naime, preliminarni pregled, u bolnici Children’s Hospitalu St. Louis-u koja je prepoznata kao nacionalni centar za spastičnu cerebralnu paralizu u USA (Nationally Recognized Surgical Care for Spastic Cerebral Palsy), od strane dr. Parka potvrđuje da je Tia kandidat za operativni zahvat Selective dorsal rhizotomy. (https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy)

Operacija podrazumijeva zahvat na kralježnici, kojim će se, laički rečeno, smanjiti hypertonus i spazam mišića, koji joj onemogućavaju normalan pokret nogu, odnosno koračanje, zatim slijedi ortopedski zahvat na ligamentima donjih ekstremiteta te svakodnevne fizikalne terapije, sve u bolnici u St. Louis-u u trajanju 30-40 dana.

Tia je u zadnjih godinu dana krenula koristiti hodalicu, no zbog prevelikog spazma nije u mogućnosti izvoditi korake. Kako je trenutno dosegla svoj motorički maksimum ovaj operativni zahvat će joj omogućiti da daljnjim terapijskim vježbanjem uz pomoć neurorobotike u Poliklinici Glavić ostvari svoje prve samostalne korake i postane što samostalnija budući da sljedeće godine kreće u osnovnu školu.

Operacija je planirana za ožujak 2023. godine, a ukupan iznos koji je potrebno uplatiti 45 dana prije termina operacije je 65.115,00 $ plus putni troškovi i troškovi smještaja.

U prilogu Vam dostavljam broj žiroračuna za uplatu donacija, cjenik SDR operativnog zahvata u Children’s Hospitalu St. Louis-u, kao i pismo dr. Parka koji će izvesti sam zahvat, iz kojeg se mogu iščitati benefiti samog zahvata na Tijin budući motorički razvoj.

Unaprijed se zahvaljujem!

Lijep pozdrav,

Narcisa Osekovac

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