HELP our children with Dravet syndrome

Fundraising campaign by Irena Chifor
  • US$20.00
    raised of $3,300.00 goal goal
0% Funded
1 Donors

No more donations are being accepted at this time. Please contact the campaign owner if you would like to discuss further funding opportunities

Show more
Show less

PLEASE HELP US DO SOMETHING IMPORTANT FOR OUR CHILDREN AND IN THIS WAY ENABLE THEM TO HAVE A BETTER LIFE AND MORE JOY IN THEIR CHILDHOOD!WE URGENTLY NEED FUNDS FOR 3 NEUROLOGICAL WHEELCHAIRS.

By donating, you enable the purchase of aids that cannot be obtained through the social protection system for people with Dravet syndrome, such as wheelchairs, pulse oximeters, various surveillance cameras, rms in case of attacks, special glasses, cooling vests. 20 families of children suffering from Dravet syndrome are gathered in our association. We urgently need funds for 3 neurological wheelchairs.



Dravet Syndrome Serbia is a non-profit, non-governmental and non-political organization, and all those who participate in the work of the Association are volunteers. In our Association, there are parents of Dravet Syndrome patients aged 6 months to 39 years, from the territory of the Republic of Serbia.

What is Dravet syndrome?

Dravet syndrome is a very rare and severe form of epilepsy that begins in early childhood, most often during the first year of life. The initial attacks are in the form of tonic-clonic attacks, most often of prolonged duration and usually occur at high temperature (in the beginning, everything resembles febrile convulsions). Seizures are very difficult to control with existing drugs and special medical treatment is necessary. Usually during the second year of life, other types of seizures appear: myoclonism, absences (staring), partial seizures... The most dangerous condition in which a child's life is threatened is Status epilepticus. It is a prolonged attack that can be stopped only in hospital conditions. Dravet syndrome sufferers have a several times higher risk of SUDEP (sudden unexplained death) than the rest of the population suffering from epilepsy. It is estimated that 1 in 1,000 people with epilepsy die each year from SUDEP. To better understand, approximately 65 million people worldwide live with epilepsy. Unfortunately, many of them and their loved ones are unaware of the risk of SUDEP. Given that there are deviations from this general clinical picture, when we talk about Dravet syndrome we are talking about a spectrum. All variants of the spectrum of Dravet syndrome are associated with genetic mutations, primarily the mutation of the SCN1A gene.

Everyday life with Dravet syndrome

Children with Dravet syndrome, in addition to uncontrolled epileptic seizures of all kinds, often face various developmental challenges such as delayed cognitive development, disorders from the autistic spectrum, delayed speech development, impaired ability to socialize, problems with behavior, nutrition, sleep, orthopedic disorders, balance and movement disorders, sensory integration disorder, thermoregulation disorder and other disorders of the autonomic nervous system (body temperature, sweating, pain...), chronic infections, especially of the respiratory tract, ears and intestines, etc. Regular check-ups and early intervention ( treatments, psychomotor re-education, psychological, occupational and speech therapy) can contribute to a better developmental outcome in children with Dravet syndrome. Children with Dravet syndrome need constant supervision and care. It is necessary to constantly consider and avoid the triggers of attacks.

Dravet syndrome is one of the most resistant epileptic syndromes to existing pharmacological therapy. Children with Davet syndrome cannot outgrow this syndrome and such a permanent condition affects their quality of life every day. The forecasts are very unfavorable. They need permanent care and supervision, which is emotionally, physically and financially very exhausting for family members. It is necessary to constantly consider and avoid the triggers of attacks. All excitement, joy, sadness, physical activity, light sensations, warm summer day, swimming... are forbidden to them.



Donations can be made also to account: dinar 105000000291873514 AIK BANKA and foreign currency RS3510500000291873514 AIK BANKA (more detailed instructions for inflows from abroad can be found on the official website of the Association Dravet syndrome Serbia)

Thank You for your interest and help!!

www.dravetsrbija.org

E-mail: [email protected]


Mi smo grupa roditelja dece obolele od retkog epileptičkog sindroma poznatog kao Dravet sindrom. Okupili smo se u Udruženje kako bi učinili sve da podignemo kvalitet života naših najmilijih. Naše retko je naše sve! Pridružite nam se da zajedničkim snagama pomognemo našoj deci!

Hitno nam treba finansijska pomoć kako bi obezbedili 3 komada invalidskih neuroloških kolica!


Udruženje Dravet sindrom Srbija je neprofitna organizacija,a svi koji učestvuju u radu Udruženja su volonteri.Pomozite svojim novčanim prilozima sprovođenje daljih aktivnosti u cilju poboljšanja kvaliteta života obolelih od Dravet sindroma. Potrebna su nam sredstva radi nabavke različitih medicinskih pomagala,koja su neophodna našoj deci,a na koja nemaju pravo u sistemu zdravstvene zaštite. U našem udruženju su oboleli starosti od 6 meseci do 39 godina,ukupno 16 porodica.

Hitna je nabavka 3 invalidskih kolica!

Hvala puno na podršci! Zajedno smo jači i vidljiviji!

ŠTA JE DRAVET SINDROM?

Tešku mioklonu epilepsiju u detinjstvu opisala je francuska doktorica,neuro-pedijatar,Charlotte Dravet 1978.godine i po njoj je sindrom kasnije i dobio ime.

  1. Dravet sindrom je vrlo redak i vrlo težak oblik epilepsije koji počinje u ranom detinjstvu,najćešće tokom prve godine života.
  2. Početni napadi su u obliku toničko-kloničkih napada, najčešće produženog trajanja i uglavnom se javljaju pri povišenoj temperaturi (u početku sve podseća na febrilne konvulzije). No,napade je teško kontrolisati i neophodan je poseban medicinski tretman.Tokom druge godine života pojavljuju se i druge vrste napada:mioklonizmi,apsansi(zagledavanja),parcijalni napadi…
  3. Najopasnije stanje u kojem je ugrožen život deteta je tzv. Status epilepticus.To je dugotrajan napad koji se može zaustaviti samo bolnički uz antiedematoznu terapiju.hErsboleli od Dravet sindroma imaju i veći rizik od javljanja SUDEP-a (iznenadne neobjašnjive smrti) u odnosu na ostalu populaciju obolelu od epilepsije.

Rani razvoj deteta je uredan,ali kako se napadi intenziviraju u drugoj godini života ,počinje da se primećuje razvojno odstupanje i drugi neurološki deficiti.Teškoće ,koje se takođe moraju lečiti , obuhvataju: usporen psihomotorni razvoj odnosno mentalnu retardaciju,poremećaje u ponašanju (uključujući i psihoze,)teškoće kretanja i ravnoteže ,usporen razvoj govora,zaostajanje u rastu,teškoće spavanja,poremećaj senzorne integracije,poremećaji termoregulacije i drugi poremećaji autonomnog nervnog sistema (telesna tempeatura,znojenje,bol…),hronične infekcije posebno disajnih puteva….

Sve varijante spektra Dravet sindroma povezane su sa genetskim mutacijama,prvenstveno mutacijom SCN1A gena.Najčešće se radi o novonastaloj (de novo) mutaciji.

Prognoze su vrlo nepovoljne.Dravet sindrom je jedan od najotpornijih epileptičnih sindroma na postojeću farmakološku terapiju.Deca sa Davet sindromom ne mogu prerasti ovaj sindrom i takvo permanentno stanje svakodnevno utiče na kvalitet njihovog života .Njima je neophodna stalna nega i nadzor sto je emocionalno i fizički veoma iscrpljujuće za sve članove porodice...često je jedan roditelj onemogućen da radi što se odražava i na životni standard.

Veliko hvala unapred na vašoj podršci za lakši i bolji život naše dece!

Organizer

Donors

  • Yuzen Lee
  • Donated on May 21, 2023
$20.00

No updates for this campaign just yet

Donors & Comments

1 donors
  • Yuzen Lee
  • Donated on May 21, 2023
$20.00

Followers

0 followers
No Followers Just Yet...

Support Campaigns

campaigns

Create a support campaign in seconds!

Support campaigns allow you to get your own fundraising page dedicated to 'HELP our children with Dravet syndrome'

You'll have your own unique link that you can share, and all funds raised will go directly to 'HELP our children with Dravet syndrome'. It's the ultimate way to show your support!

Create support campaign
US$20.00
raised of $3,300.00 goal
0% Funded
1 Donors

No more donations are being accepted at this time. Please contact the campaign owner if you would like to discuss further funding opportunities