About Julia

 Julia Maria was born on October 09, 2016. In just her fifth month of life she was diagnosed with mixed tetraparesis with extrapyramidal component and athetosis (cerebral palsy). Every day Julia fights with hypertonia and involuntary movements. She is also affected by gastroesophageal reflux, among other conditions. She currently lies in bed, has not started babbling yet and is fed via PEG (percutaneous endoscopic gastrostomy). Still, she can roll to her sides without assistance, likes to “spin” on her belly and has recently started smiling.

Apart from love and tenderness, Julia needs intensive rehabilitation and specialized care. From the very first week of her life she has been treated with NDT-Bobath treatment and with Vojta treatment since her third month of life. Supervised by neurologopedists she very slowly learns how to use her mouth. She tries to look at contrast drawings to activate her sight and every day listens to soothing music, just like her Mommy used to play when she was still in the belly. She absolutely loves cuddling and having her little head washed.

Julia receives wondeful care from the Wielkopolskie Stowarzyszenie Wolontariuszy Opieki Paliatywnej „Hospicjum Domowe” (the Wielkopolska Region Association of Home Care Volunteers), located at Bednarska street in Poznań, and Poradnia Żywienia Dojelitowego i Pozajelitowego w Warunkach Domowych (the Outpatient Clinic for Enteral and Parenteral Nutrition) at Przybyszewskiego street, both in Poznań. She is also a ward of Stowarzyszenie na Rzecz Dzieci ze Złożoną Niepełnosprawnością (the Association for Children with Complex Disabilities) „Potrafię Więcej” located at Rubież street.

Apart from pediatricians, neurologists and other specialty doctors, Julcia receives amazing help from a whole team of fantastic rehabilitators and neurologopedists, an osteopathic physician and the “eye-lady”. Julcia’s parents, known as the ”old folk” put in a lot of work, just like her Grandma, who loves to spoil the baby and carries her everywhere.

Although the more spectacular successes in Julia’s development are yet to come, the parents are obviously happy with Julcia’s every little achievement – even the faintest smile, every time she reaches for a toy, looks us in the eye or lifts her legs…

Every single day Julka bravely fights to become and independent child, while her parents keep searching for new therapies that would help her grow and give her some relief. Unfailingly, they also believe that one day a Miracle will happen…

 

History

Julia was born in the 40th week of pregnancy, on Sunday, October 09, 2016, at 23:58, in Franciszek Raszeja Municipal Hospital in Poznań.

The pregnancy developed correctly and Julia was a very active baby when still in the belly. In the 39^th week however, Julia’s mom went to hospital with suspected gestational hypertension, for observation. The observation would go on and on… the doctors were considering to terminate the pregnancy but nobody made any decisions. Julia’s movements, however, already grew weaker… In the end, the delivery began by itself. Due to the green waters and rapidly dropping pulse, a decision was made to do a C-section.

Julia’s condition at birth was bad (Apgar score 4/4/8/8). She had to be resuscitated after birth and was confined to an incubator. Reduced muscular tension was observed at first. Convulsions were observed on the second day, along with increased muscular tension. Julia exhibited little activity. She first cried in her third week of life. Any attempts to feed her with a bottle ended in choking, so a gastric tube had to be used. Julia had to have her mucus sucked away frequently. The doctors from the Raszeja hospital could not offer a diagnosis; among else, there was talk of a genetic disease.

The girl’s stay at the Neonatology Clinic at Polna street in Poznań gave some cursory, initial insights. The MRI of the brain showed extensive and advanced hypoxic-ischemic changes, including periventricular leukomalacia. It is unknown what caused these changes. The search for metabolic and genetic diseases continued, to no avail… We still don’t know what and when wrong…

 

Hospital history

Unfortunately, Julia has been a regular patient of numerous hospitals in Poznań:

• 09.10.2016 – 02.11.2016 – Franciszek Raszeja Municipal Hospital „Raszeja”- birth, pneumonia
• 02.11.2016 – 15.12.2016 – Gynecology and Obstetrics Teaching Hospital of the Medical University in Poznań, Neonatology Department „Polna”- diagnosis of hypoxic-ischemic encephalopathy, observation for suspected metabolic and genetic diseases, two cases of pneumonia
• 17.01.2017 – 17.02.2017 r. – Specialized Health Care Center for Women and Children, Independent Public Complex of Health Care Facilities „Krysiewicza” – acute respiratory failure, bilateral pneumonia. Patient of the Intensive Care Unit, 13 days with a respirator.
• 03.04.2017 – 14.04.2017 – Karol Jonscher Teaching Hospital of the Karol Marcinkowski Medical University in Poznań „Szpitalna” – pneumonia, diagnosis of gastroesophageal reflux  and underweight
• 17.04.2017 – 05.05.2017 – Karol Jonscher Teaching Hospital of the Karol Marcinkowski Medical University in Poznań „Szpitalna”- enteritis caused by rotavirus and another pneumonia; a multi-departmental council gathers to recommend gastrostomy and an anti-reflux surgery
• 15.06.2017 – 30.06.2017 – Karol Jonscher Teaching Hospital of the Karol Marcinkowski Medical University in Poznań „Szpitalna” – performing gastrostomy and Nissen fundoplication; patient of the Intensive Care Unit (4 days with a respirator)

 

How to help

You can help Julia in her struggle for better future.

You can help Julia in a good word, share your experience in the fight against cerebral palsy and information about new therapies you know. This is very important for Julia.

Contact e-mail to mom Julia, Dominika Kłopotowska: dominika.zurawska@gmail.com

Donation

Julia is cared for by Fundacja Pomocy Osobom Niepełnosprawnym (Foundation for the Assistance for People with Disabilities) „Słoneczko”, 77-400 Złotów, Stawnica 33A, NIP 767-15-85-965.

Payments can be made to:

Fundacja Pomocy Osobom Niepełnosprawnym „SŁONECZKO”, 77-400 Złotów, Stawnica 33A, KRS (National Court Register): 0000186434, NIP 767 15 85 965, REGON 572125388

Bank accounts: Spółdzielczy Bank Ludowy Zakrzewo, Oddział w Złotowie

Donations in PLN:

89 8944 0003 0000 2088 2000 0010

To make sure that the donation reaches Julia, please put the following indication as the payment’s title: 1107/K KŁOPOTOWSKA JULIA

Donations in EUR:

76 8944 0003 0000 2088 2000 0050

To make sure that the donation reaches Julia, please put the following indication as the payment’s title: 1107/K KŁOPOTOWSKA JULIA

Donations in USD:

97 8944 0003 0000 2088 2000 0060

To make sure that the donation reaches Julia, please put the following indication as the payment’s title: 1107/K KŁOPOTOWSKA JULIA

The SWIFT code (or BIC) for payments coming from abroad: GBW CPL PP

Country code: PL

You can also donate 1% of your tax. To do this, please indicate the Foundation’s KRS number in your yearly tax return (Poland): 0000186434. Please also make sure to indicate the particular recipient of the funds: 1107/K KŁOPOTOWSKA JULIA

These funds will be used to pay for consultation visits with specialized physicians, rehabilitation, new therapies (e.g. micropolarization), medicines, specialized rehabilitation and medical equipment.

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