The family of a 10-year-old girl from Kildare is urgently appealing to the Health Service Executive (HSE) for more assistance as they prepare for a life-altering surgery for their daughter, Anna Malinovskaya. Anna, described as a “beautiful, kind, happy little girl,” began experiencing seizures in December 2021. Initially, the seizures were mild, but they progressively worsened, leading to her hospitalization for several weeks in July 2022. Following numerous tests and MRIs, Anna was diagnosed with Rasmussen encephalitis, an extremely rare inflammatory neurological condition. Unfortunately, Anna’s health has continued to deteriorate, and she is frequently hospitalized due to severe seizures.
Anna’s mother, Inna, shared with Dublin Live that surgery is the only viable treatment for the seizures caused by this rare disease, but it will have significant repercussions for Anna as the affected portion of her brain must be removed. Tragically, this procedure will result in complete paralysis on the affected side of her body. To adequately prepare Anna for life after surgery, her medical team emphasizes the importance of receiving physiotherapy and occupational therapy. However, the family is primarily funding these sessions privately, as Anna’s appointments with the HSE’s North Kildare Children’s Disability Network Team are infrequent, occurring only every few months.
Inna expressed her frustration with the lack of support from the HSE, stating, “We are attending physio privately, and the difference it makes for Anna is remarkable. The HSE appointments are scarce, and the sessions are mostly assessments with minimal hands-on therapy. We have weekly private appointments now, but post-surgery, she will require daily therapy. Without our current efforts, Anna would likely end up in a wheelchair.” The timing of Anna’s surgery is yet to be determined, as her medical team and family are prioritizing thorough preparation.
Following the surgery, most children are hospitalized for seven to ten days before transitioning to rehabilitation, which includes intensive physical, occupational, and speech therapy. Anna’s family is advocating for increased support from the North Kildare Children’s Disability Network Team to enhance her quality of life and aid in her preparation for the forthcoming transformative surgery. Inna explained, “They will be removing half of Anna’s brain hemisphere, which is an incredibly rare and complex procedure.”
The HSE has been contacted for comment regarding Anna’s case, and Dublin Live will continue to follow this story for updates. For the latest news from Dublin and the surrounding areas, visit our homepage. Join our Dublin Live breaking news service on WhatsApp to receive daily updates. Additionally, community members can access special offers, promotions, and advertisements from us and our partners. If you wish to discontinue receiving updates, you can opt out at any time. For more information on how we handle your data, please refer to our Privacy Notice.
This heartbreaking situation highlights the challenges faced by families navigating complex medical conditions and the critical need for adequate support systems. As Anna and her loved ones confront this difficult journey, their plea for assistance underscores the importance of accessible and comprehensive healthcare services for individuals facing rare and debilitating illnesses.
Challenges and Struggles
Anna’s diagnosis of Rasmussen encephalitis has presented her family with numerous challenges and struggles. The rarity of her condition, coupled with the severity of her symptoms, has made it difficult for them to access the necessary care and support. The limited availability of services from the HSE has placed a significant financial burden on the family as they seek private therapy sessions to help Anna cope with her condition.
The Impact of Surgery
The impending surgery that Anna will undergo is not only life-changing but also fraught with uncertainties and risks. The removal of half of her brain hemisphere is an intricate procedure that will undoubtedly have profound effects on her physical and cognitive abilities. The family’s plea for increased assistance from the North Kildare Children’s Disability Network Team reflects their desire to ensure Anna’s well-being and quality of life post-surgery.
Community Support and Advocacy
In the face of adversity, Anna’s family has demonstrated resilience and determination in advocating for her needs and raising awareness about her condition. Their efforts to secure the best possible care and support for Anna exemplify the power of community solidarity and the importance of coming together in times of crisis. As they navigate this challenging journey, their story serves as a poignant reminder of the strength and resilience of families facing extraordinary circumstances.