We came to Vimbukrog, Ķekava parish, to visit seven-year-old Ralf and his family – mother Agnes, father Mārtiņas and 13-year-old sister Ester. Three fluffy cats and Ralph with a big smile welcomed us at the doorstep.
Ralph is a favorite of the whole family. Unfortunately, it is with him that all the worries and biggest concerns of parents are connected. With the birth of Ralph, family life has completely changed. Now everything is subordinated to one goal – taking care of the health of the youngest son.
The charity BeOpen has also opened a special donation account to help seven-year-old Ralfs Bunkis pay for these much-needed important lessons. No interest or commissions are deducted from the funds received in the account.
Charitable foundation BeOpen
Reg. No. 50008218201,
Account No. LV79 CBBR 1123 2155 00620
Bank SWIFT code: CBBRLV22
Objective: Green Lamp. Help to Ralf Bunkis
Ralph has a genetic disease – Angelman syndrome. Simply put, the child is missing some developmentally important genes due to a mutation on chromosome 15. Consequently, there is a pathology characterized by mental development disorders, sleep problems, chaotic movements, delayed speech development, frequent laughter. Epileptic seizures are also possible. This disease is also called “happy doll syndrome”. There are only 16 such children in Latvia.
The parents did not find out about the diagnosis right away. They were looking forward to the birth of their son. Agnes’ pregnancy went normally, the baby was born on time and very quickly, but with bilateral lung pneumonia. Doctors decided to keep the boy in an incubator for a few days. They were then discharged home.
Everything went well, the boy developed normally. However, at the age of about five months, after the complex vaccination, his development seems to have stopped and he is said to be regressing, says Agnes. The osteopath recommended a good neurologist, who also felt that serious tests were needed because something was not right. “I was angry with the doctor because I didn’t want to believe and accept that something was wrong with my child. So I went to another neurologist, who, in turn, said that the boy is just lazy. I was happy, but still we did all the tests. The last one was the genetic analysis, where we found out the diagnosis – Angelman syndrome”.
“At the time, I had no idea what it was. When I found out, of course I couldn’t control my tears,” says Agnese. – But Ralph’s neurologist said not to cry, because we finally know what is what and what to do. Angelman syndrome has different degrees, luckily for us it is not the most severe”, says Agnese.
At the age of 3.5 years, Ralph learned to walk, but soon after that he also started to run. Now he is always on the move. It is almost impossible to put him down, the boy chaotically runs around the room and very actively wants to communicate. He is interested in touching and feeling everything. “He likes, for example, splashing in the water and chasing flies,” laughs mom.
Ralph has trouble sleeping. He sleeps very little. “There were periods when he slept only three hours a night, it was very difficult. We were forced to give him melatonin. Now Ralph has a special crib and we try to follow the regime,” says mom.
Unfortunately, the boy still does not speak at all. The parents are very hopeful that the ABR therapy course according to the Belgian system, which the family needs our help to pay for, will help him develop his speech abilities.
Fortunately, with the help of medication, the parents have managed to defeat Ralph’s epileptic seizures. Well, there have been no seizures for a long time.
Once a week, Ralf’s nanny Daina, who works professionally with seriously ill children, comes to visit him. “Ralph loves her very much. And these feelings are mutual for them. When Daina is around, he becomes calmer,” says Agnes.
Agnes is smiling and looks very calm, but you can see how tired she is. And not only physically, although it is an indescribable burden. He is always haunted by anxious thoughts – what to do? How to help my son?
Ralph is very tactile – he likes to cuddle, touch, hug and is always smiling. A boy demands attention 24 hours a day and cannot be left alone for even a moment. The family lives like that – in non-stop mode, replacing each other. Mom, dad and older sister are all involved with Ralph.
Grandparents often come to help them – Agnes’ parents, who love their grandson very much. The husband’s parents set aside their house for the new family and themselves moved to a summer house, which they rebuilt so that they could live there all year round. At least now Ralph has a place to run around.
“My mother lived in Norway,” says Agnes. “After learning of Ralph’s diagnosis, she enrolled in medical school, taking courses in kinesiology, acupuncture and reflexology. She has received a diploma and can work professionally with Ralph. However, she cannot work in this specialty in Latvia, because, inexplicably, the Norwegian diploma is not recognized here.”
Agnes, of course, dreams of Ralph learning to speak. He has potential. “It would be much easier for all of us, because we would understand Ralfin’s needs and wishes faster,” says the mother. “But his speech center is underdeveloped. He can only say the word “mom”. Although children with this diagnosis can, in principle, say up to 15 words.”
Carrying such a burden without faith and hope is impossible. And Agnes strongly believes in the best. She is constantly searching for all kinds of scientific publications on the subject. And she knows that gene therapy is developing rapidly in the world. In America, this disease is being studied very successfully.
But for now, they have to do the best they can. It is both physiotherapy and massage, as well as classes with an osteopath, micro speech therapist and other specialists. It is also kinesiology, which studies the connection between movement and brain activity and activates the natural mechanism of recovery.
“Ralfs already knows how to eat with a spoon, we are currently teaching him to dress himself, which is not yet successful,” says Agnese. She believes that one day Ralph will be able to do it. Ralph is also very fond of music and likes all kinds of vibrations, for example, when he hears the sound of a motorcycle engine, he stops and listens.
Agnes is a hairdresser by profession and previously worked in a beauty salon. Now, of course, she cannot work. Ralph’s father, Mārtiņš, works in construction. 3 years ago, Mārtiņš had a serious back surgery and had a long recovery period. Ralph’s dad was only able to resume work last November.
Agnese and Mārtiņš have been together since 2005. They were introduced by friends, inviting them to walk around Old Riga. Since that day they have been inseparable. “Mārtiņas and I are kindred spirits,” laughs Agnes. “We can chat all night about anything.” August 1 was their 15th wedding anniversary.
The eldest daughter of Agnes and Mārtiņš, Ester, is in the 7th grade. She has been dancing for 6 years. Agnes is worried that her eldest daughter is not getting enough attention and tries hard to be not only her mother, but also her friend. Esther understands everything. She is very helpful and takes care of her little brother.
Agnes recently received information about the clinical trials of genetic diseases conducted in America. “I would like to try to participate in the study. I believe in signs,” says Agnes. “When I saw that a girl from Latvia, Ulrika Beitner, was working there, all my doubts disappeared. And, oh wonder, I met him right on Ralph’s name day.
Ulrika told me how research is going and that gene therapy will be possible. But we have to wait another 5 years. They are working on drugs that can help exactly in such cases – to wake up the sleeping chromosome. Specialists hope that they will be available within five years.”
Agnes strongly believes that everything will work out. “We will wait and do everything possible and impossible to help Ralph. We will not give up,” she says.
“And what do you dream about?” we asked. Agnes laughs sadly: “Sleep!”
Who needs funds
The family very much hopes that Ralf will be helped by an ABR therapy course with Belgian specialists who will arrive and work in Riga at the beginning of September. The results of these classes are very impressive. In Ralph’s case, it would be an opportunity to learn to control his body, improve his behavior and socialization, and maybe even start talking.
The price of the annual course of ABR therapy is 6450 euros. Classes will start very soon.
Families raising children with severe disabilities need our help and support so that they do not feel abandoned to their fate. If you have been moved by this story and feel you can help seven-year-old Ralph, please don’t miss out. The family will be extremely grateful to you. And every euro really counts here.
What is ABR therapy?
Specialists of the ABR Belgium (Advanced Biomechanical Rehabilitation) clinic conduct detailed tests on the child’s current biomechanical condition and structural deformations, after which parents receive an individual rehabilitation program for the child for the next period.
Parents are given the opportunity to learn the practical ABR course (lectures and practical lessons), after which they can independently deal with their child. The ABR method has an undoubted positive effect in almost all cases, even the most severe, and increases with constant practice
2024-10-08 02:49:11