Idara Campaign, "More warrior than princess"
Idara Campaign, "More warrior than princess"
https://www.instagram.com/idara_2018/
Entity information
  • Description
  • Projects
  • - The mother tells us about Idara:
  • Idara is 4 years old, since we were told about the genetic mutation that she has in SCN8A, life has changed us completely, we have changed the park for the hospital, the toys for rescue medication, the friends for the ambulance, etc...
  • Idara is our little fighter of life, the most warrior, the one who has been through intensive care several times, has had many hospital admissions, has survived convulsions that stopped breathing... but her inner strength is what fights to live.
  • Her encephalopathy is catastrophic, psychomotor retardation, spasms, inconsolable crying, digestive problems, risk of aspiration, daily seizures, refractory epilepsy, risk of sudden death, the worst diagnosis they could give us.
  • Idara must be monitored 24 hours a day, because it is not known when she is going to have a seizure, her rescue medication and the AMBU (manual resuscitator) must always be on hand in case she stops breathing during the seizure.
  • At home, at night we connect an apnea monitor, the monitor does not capture all the crises that she has, so we must always be on alert.
  • In our case, only my husband can work because I am the one in charge of all Idara's care, with Idara you cannot neglect for a second and not act well and run the risk of losing her, that is why our economic situation is frankly wrong.
  • Monthly, due to Idara's illness we have many more expenses as you can imagine. Thanks to a campaign we did on Go fund me and the sale of bracelets we have been able to pay for Idara's orthopedic chair and standing frame, without you it would have been impossible.
  • For all this I am here asking for help. Idara would need to carry out more therapy that she is not doing because she does not have money and orthoses (walker, upsee, irisbond...) but only with my husband's salary it is impossible.
  • - The father of Idara tells us:
  • Everything we are going through is very painful for the whole family, no one can imagine what we are going through and this affects us all a lot.
  • As you can imagine, nobody wants a child to be sick and without a cure, it is the worst for parents. We pray daily for the Lord to perform a miracle in her because we still don't have a cure. Faith is what keeps us on our feet, although sometimes we have moments of weakness when you don't want anything more than this to end.
  • - Idara's sister, who is 8 years old, tells us:
  • I want my sister to get well.
  • That she stop going in the ambulance with mom.
  • I hope that when she grows up she knows how to walk and talk about her so I can play with her.
  • That she can pet our dog.
  • That she can play with friends and make friends.
  • That she can hug me and tell me that she loves me.
  • - The parents tell us about Idara's sister:
  • Eleia, she is the best sister Idara could get.
  • Eleia, she has always been a girl with a big heart, very good, always protecting and caring for others.
  • Everything that she sees that she happens to her sister is very hard and more so for a girl. She is having to cry a lot, every time she sees her sister have convulsions, when it seems that she is leaving us, when her sister is admitted to the hospital... we remember the first admission when she came to see Idara when she told us when she was 5 years old that she wanted us to buy her something in the hospital store and out of everything there (sweets, toys, ice cream, gifts) she chose a toy doctor's bag because she wanted to cure her sister.
  • I wish that briefcase could have cured her and thus have saved us so much suffering.
  • Because living this daily is a nightmare.
  • The family needs financial help to cover expenses; Increase therapies with Idara.
  • Buy orthopedic walker for Idara and other orthotics she needs like Upsee, Irisbond, etc...
  • We want to thank you from the bottom of our hearts for your understanding and desire to help.
  • The money raised will be used exclusively for what is described above.
  • The family needs financial help to cover expenses; Increase therapies with Idara.
  • Buy orthopedic walker for Idara and other orthotics she needs like Upsee, Irisbond, etc...
  • We want to thank you from the bottom of our hearts for your understanding and desire to help.
  • The money raised will be used exclusively for what is described above.
  • If you want to see our little girl, you can follow her on Instagram @Idara_2018
  • The Gofundme campaign https://gofund.me/d7e36329
  • May health always be with you all!