Sunday, April 13, 2014

Binnija Amanda


Autor: Ilze Skuja
PHOTO DONATION: Rolfs Vendiņš

It brings so much joy to help others without asking anything in return, and it is so difficult to ask for help when it is so much needed. Aiga and Artūrs is a couple that has helped many families by donating clothes, care accessories, baby food, a chair for feeding, books, a digital photo camera, bedclothes, crockery... Now the fate has put the family on the other side of the “bridge of help” – they have turned from active donators and providers of help into those asking for it.

This story is about the firstborn two-year old daughter of Aiga and Artūrs, Binnija Amanda whom each one of us can help in becoming healthy.

“Wonderful pregnancy, easy and beautiful birth”, Binnija Amanda’s mother Aiga tells Palīdzēsim.lv. “A little trouble happened the next day, when the daughter did not suck out a single drop from the breast, as a result losing 200 g of her birth weight. The breast is sucked out to blood, and yet there is nothing in her tummy... We were admitted to Children’s Intense Care Unit. No pathologies were diagnosed.”

Next two days the daughter was fed with expressed milk and artificial baby milk until she restored her strength.

“Of course, I was worried. Our family doctor calmed us down that everything was alright, that we should not look for problems with the child”, Aiga tells.

As she turned 8 months old, Binnija Amanda still did not crawl, and it worried the parents. “Massage, gymnastics, and the child started to crawl around the house. We repeated gymnastics, and when she was almost one year old, Binnija Amanda was able to sit and crawl, stand on her knees.”

The parents took the girl to neurologists, osteopaths, a rehabilitation therapist, physiotherapists, but none of the specialists would determine the diagnosis, however “the first had worries about muscles, the second – about ligaments, the third – about shins...” – Aiga remembers.

In order not to fall behind in child’s development, the parents did not wait in line for state-paid procedures, but rather took the girl to several procedures for money.

As Binnija Amanda turned a year and 4 months old, the neurologist determined the diagnosis – muscular hypotonia syndrome. Due to swimming and other exercises, the girl was able to stand on her legs a month later, another three months later – she mastered walking while holding to the furniture. The parents hoped that at the age of two the daughter would be able to walk by herself and run; however, in September 2013 the results of the examination carried out at the Children’s Clinical University Hospital changed the life of the family drastically – demyelinating axonal sensory and motor polyneuropathy was diagnosed, suspected Charcot–Marie–Tooth disease. “For a year and a half we have lived with the thought that Binnija is a healthy child who plays hockey, does folk dances, and now we have found out that she is to receive disability.”

It is needless to say that parents are devastated. “It is some kind of emotional vacuum. When you are like a frozen water – no colour, no smell...”

No matter how upset the parents are with fate’s unfairness, they still do not give up and do everything they can in order to help their child, following Binnija Amanda’s development. The girl is regularly taken to an ergotherapist and speech therapist, she does Montessori activities and undergoes physiotherapy.

As she turned two years old, Binnija was able to get into bed and get out of it by herself, to crawl up the stairs, to walk holding by the hand more solidly indoors. Unfortunately, it is still impossible in winter boots and winter clothes outdoors.

Binnija Amanda is a calm and well-tempered child. The girl likes music, sea, water and looking out of the window. As I noticed during our meeting, Binnija Amanda examined the toys with genuine interest in the children’s play room, where the conversation between the family and Palīdzēsim.lv took place. Under the guidance of her father the girl went down the slide and was climbing everywhere she wanted.

The parents do hope that Binnija Amanda will not have the Charcot–Marie–Tooth disease confirmed; they believe that the girl will be able to walk and are happy about everything she does by herself – sitting, crawling, standing on her legs, walking by the hand, climbing...

Unfortunately, the patient in Latvia has no possibility of receiving precise genetic diagnostics, therefore a geneticist is currently searching for a laboratory in Finland or Estonia, which would be able to determine the type of this disease (Charcot–Marie–Tooth disease has over 70 subtypes), in order for Binnija Amanda’s parents to know what to do next, where to search for help. Once such laboratory is found, a document will have to be drawn up asking the state to pay for these tests.

This process goes rather slowly, since a lot of Latvian children have faced genetic problems.

The good news is that no damages were found during the magnetic resonance imaging of Binnija Amanda’s brain. Chromosome tests and metabolism tests were good; now there is only a test-tube of blood waiting for the laboratory and payment issues to settle.

Since the intense work carried out by Aiga and Artūrs up till now has fell short of expectations, they are ready to do more, more and more for the good of their child... In their opinion, the most important is to continue working, being active, searching for possibilities of help, in order to prevent disease progress. One of such possibilities is offered by the dolphinarium “Nemo” in Odessa, Ukraine, where the parents want to take Binnija Amanda in order to stimulate the improvement of girl’s health with the help of dolphin therapy rehabilitation course.

The costs of dolphin therapy (including additional procedures) are EUR 3000.

Let’s help!

You can help Binnija Amanda by donating money to the account of the charity organization Palīdzēsim.lv:

ORGANIZATION “PALĪDZĒSIM.LV”
Unified reg. No. 40008137568
Address: Jauniela Street 21-1, Riga, LV-1050
Postal address: Duntes Street 28-197, Riga, LV-1005

PAYMENT REQUISITES:
JSC “SEB banka”
LV90UNLA0050013761397
SWIFT code: UNLALV2X

When making a payment, please, specify the exact aim of the payment: for Binnija Amanda.

If you do not wish for your name to appear in the list of donators, please, specify the following in the aim of the payment: “Anonymous”.

Palīdzēsim.lv does not withhold any service fees or agent's fees for donations. 100% of all donated money goes to the intended purpose.

You can read more about the activity of the charity organisation Palīdzēsim.lv here: www.palidzesim.lv

Follow the use of donations at: http://palidzesim.lv/palidzesim/binnija-amanda





The amount still needed: 509,11 EUR (from 3000 EUR; 11.04.14.*)


Huge thanks to Binnija’s angels:
Anonīms EUR 20,- (10.03.14.)
Anonīms EUR 10,- (11.03.14.)
Anonīms EUR 20,- (12.03.14.)
Anonīms EUR 20,- (13.03.14.)
Anonīms EUR 100,- (13.03.14.)
Anonīms EUR 10,- (17.03.14.)
Anonīms EUR 5,- (24.03.14.)
Anonīms EUR 20,- (24.03.14.)
Anonīms EUR 20,- (24.03.14.)
Anonīms EUR 5,- (25.03.14.)
Anonīms EUR 20,- (25.03.14.)
Anonīms EUR 10,- (25.03.14.)
Anonīms EUR 100,- (25.03.14.)
Anonīms EUR 7,- (26.03.14.)
Anonīms EUR 5,- (26.03.14.)
Linda Kemnica EUR 1,42  (26.03.14.)
Armands Tomelis EUR 10,-  (26.03.14.)
Jeļena Puncule EUR 30,-  (26.03.14.)
Anonīms EUR 20,-  (26.03.14.)
Maiga Kuzma EUR 20,-  (26.03.14.)
Anonīms EUR 5,-  (27.03.14.)
Anonīms EUR 20,-  (27.03.14.)
Anonīms EUR 5,-  (28.03.14.)
Anonīms EUR 20,-  (03.04.14.)
Inga Brente-Mieze EUR 10,- (03.04.14.)
Anonīms EUR 5,- (03.04.14.)
Kačaļina Ināra EUR 7,- (03.04.14.)
Mihailičeva Jeļena EUR 10,- (03.04.14.)
Anonīms EUR 22,22 (03.04.14.)
Rasals Dmitrijs EUR 20,- (03.04.14.)
Tatjana Kolomeiceva EUR 10,-  (03.04.14.)
Aleksejs Zajacs EUR 100,-  (03.04.14.)
Dmitrijs Počebits EUR 5,-  (03.04.14.)
Jekaterina Mirzojane EUR 10,-  (03.04.14.)
Jekaterina Kuzņecova EUR 15,-  (03.04.14.)
Anonīms EUR 25,-  (03.04.14.)
Anonīms EUR 15,-  (03.04.14.)
Vadims Šults EUR 15,- (03.04.14.)
Juris Pēpulis EUR 25,- (03.04.14.)
Irina Pidjaša EUR 50,- (03.04.14.)
Svetlana Žuka EUR 5,- (03.04.14.)
Viktors Rundāns EUR 100,- (03.04.14.)
Anonīms EUR 20,- (03.04.14.)
Deniss Borodins EUR 30,- (04.04.14.)
Svetlana Millere EUR 2,- (04.04.14.)
Aina Deņisova EUR 10,- (04.04.14.)
Vladimirs Andrejevs EUR 5,-  (04.04.14.)
Anonīms EUR 5,-  (04.04.14.)
Irina Kalinina EUR 5,-  (04.04.14.)
Anonīms EUR 5,-  (04.04.14.)
Marina Kaļinkina EUR 10,-  (04.04.14.)
Ščerbakova Nataļja EUR 10,-  (04.04.14.)
Kudrjašova Lada EUR 35,-  (04.04.14.)
Anonīms EUR 10,-  (04.04.14.)
Lukjanovs Igors EUR 500,- (04.04.14.)
Kušels Igors EUR 10,- (04.04.14.)
Kaļiņina Nataļja EUR 20,- (04.04.14.)
Anonīms EUR 20 (04.04.14.)
Dmitrijs Tarakanov EUR 50 (04.04.14.)
Olga Lipsne EUR 15,- (04.04.14.)
Anonīms EUR 10,- (04.04.14.)
Anonīms EUR 20,- (04.04.14.)
Aleksandrs Sergejevs EUR 10,-  (04.04.14.)
Svetlana Seļeznova EUR 10,-  (04.04.14.)
Oļesja Kasatkina EUR 5,-  (04.04.14.)
Igors Musijenko EUR 5,-  (04.04.14.)
Anonīms EUR 15 ,-  (04.04.14.)
Anonīms EUR 15,62 (04.04.14.)
Natālija Citcere EUR 10,-  (04.04.14.)
Dmitrijs Vdovins EUR 11,-  (04.04.14.)
Anonīms EUR 50,-  (04.04.14.)
Miscenkova Valentina EUR 10,-  (04.04.14.)
Anonīms EUR 15,- (04.04.14.)
Girinovica Svetlana EUR 15,-  (04.04.14.)
Pogrebnojs Dmitrijs EUR 10,-  (04.04.14.)
Suprugova Jevgēnija EUR 10,-  (04.04.14.)
Tatjana Jefimova EUR 5,-  (04.04.14.)
Zujevskis Valērijs EUR 10,- (06.04.14.)
Blaževiča Žanna EUR 10,-(06.04.14.)
Meišels Vladislavs EUR 1,- (07.04.14.)
Orlova Ludmila EUR 5,- (07.04.14.)
Anastasija Vrešča EUR 5,- (07.04.14.)
Sergejs Tulins EUR 35,- (07.04.14.)
Anonīms EUR 60,- (07.04.14.)
Lubgins Artūrs EUR 20,- (07.04.14.)
Kreilis Aleksandrs EUR 10,- (07.04.14.)
Anonīms EUR 10,- (07.04.14.)
Anonīms EUR 10,- (07.04.14.)
Anonīms EUR 5,- (07.04.14.)
Aleksejs Požarskis EUR 10,- (07.04.14.)
Anonīms EUR 15,- (07.04.14.)
Vladimirs Minckovskis EUR 10,- (07.04.14.)
Ekaterina Veysa EUR 5,- (07.04.14.)
Aigars Rozentāls EUR 15,- (07.04.14.)
Anonīms EUR 10,- (07.04.14.)
Anonīms EUR 5,- (07.04.14.)
Jeļena Durandina EUR 20,- (07.04.14.)
Anonīms EUR 5,- (07.04.14.)
Anonīms EUR 10,- (07.04.14.)
Anonīms EUR 10,- (07.04.14.)
Balode Lāsma EUR 5,- (07.04.14.)
Berjozina Vera EUR 10,- (07.04.14.)
Anonīms EUR 5,- (07.04.14.)
Skorobogata Natālija EUR 10 (07.04.14.)
Anonīms EUR 10,- (07.04.14.)
Nataļja Spundiņa EUR 10,- (07.04.14.)
Vladimirs Bordulāns EUR 20,- (07.04.14.)
Aleksandrs Hlistuns EUR 10,- (07.04.14.)
Anonīms EUR 71,14 (07.04.14.)
Marina Serpova EUR 20,- (07.04.14.)
Medvedeva Tatjana EUR 10,- (08.04.14.)
Voroņins Daniils EUR 25,- (08.04.14.)
Anonīms EUR 21,- (09.04.14.)
Anonīms EUR 10,- (09.04.14.)
Anonīms EUR 8,- (09.04.14.)
Aleksandra Čerņitenko EUR 7,11 (11.04.14.)

Žeiere Lita EUR 10,- (11.04.14.)
Anonīms EUR 15,- (14.04.14.)
Micko Igors EUR 4,- (15.04.14.)
Anonīms EUR 10,- (16.04.14.)

Anonīms EUR 3 (28.04.14.)

Anonīms EUR 10 (28.05.14.)
Anonīms EUR 5 (12.06.14.)


Many thanks to the play room „Annels” for the hospitality!
 

 

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