Interview Through the glass: Willy en Ivana, parents of Danilo

Together with photographer Annabel Jeuring ,  Vettt.nl makes a series of inside views.  Where Annabel makes "contactless" photos of the bizarre situation we are in.  Vettt interviews a number of these portrayed families.  As a Vettt reader, we want to take you into the lives of other parents in Twente and how they experience this bizarre time.  Every other day you will find a new interview on Vettt.

Danilo Hesselink is a little boy of almost 9 who lives with his parents Willy and Ivana in Enschede. Due to an unknown birth defect affecting his brain, Danilo is severely handicapped. He has muscle coordination issues and has also developed a tenuous dystonia ( a neurological movement disorder syndrome in which sustained or repetitive muscle contractions result in twisting and repetitive movements or abnormal fixed postures. The movements may resemble a tremor ).  In conjunction with his Epilepsy this results in every movement having to be stimulated.  Frequent physio therapy sessions help prevent his muscles from weakening. In addition the use of an ‘Innowalk’ ( a type of exercise machine) gives him energy and helps keep him moving. Unfortunately Danilo is outgrowing the Innowalk so the family is trying to raise the necessary funds for a replacement through crowdfunding.

How are you managing during the current situation?

We are currently living in a surreal reality, it is very peculiar but it has encouraged us to think about the fundamental things in life. Nothing can be counted on anymore, nothing is normal or reliable. Mother Nature has given us a wake up call and has made us realise that we all have to look after each other and our surroundings. 

Is anyone unwell in your household?

Danilo has a chronically unwell and requires 24/7 care. Danilo can’t walk, stand, sit, speak, eat or see unaided but is otherwise physically healthy ( no cold symptoms  or runny nose etc.) We are thankfully also healthy despite these unusual circumstances. Ivana‘s parents are currently  visiting, they are stranded and can’t return home to Serbia where they live. This is an added worry as they are both on medication which has thankfully now been sorted through the GP. 

 

corona interview
Fotocredits: www.ditisjeuring.nl

How do you fill your days?

Our primary tasks include Danilo’s personal care, nursing and medicine administration. In addition Willy and Ivana both work full time for a company supplying raw materials to the bio pharmaceutical industry.  They were both already used to working from home however due to all the recent developments surrounding COVID-19 their workload as increased. The originally American company has received an essential status as it supplies the raw materials and excipients for the SARS-Cov2 test kits and vaccine research. The raw materials are also used for the production of life saving medicines.

What is the current situation like for you and Danilo?

For ourselves and Danilo’s wonderful carers not much has changed. We have always had to be careful with Danilo’s health. Danilo was also already house bound and had stopped attending the special needs child care facility. We have made immediate changes in our household to help reduce the chances of infection with the virus. We now ask all the carers to enter the house through our back door, remove their footwear and put on a clean shirt prior to washing their hands and faces. Our biggest fear is that our little man would contract the virus due to negligence.

Do you have a routine for Danilo?

Danilo has always had a strict daily routine with set feeding times. The frequent exercises that are required to keep Danilo’s muscles from stiffening and weakening also need to be done daily. Unfortunately the physiotherapist that used to come twice a week can no longer visit due to the current situation, so we have to carry out the exercises with Danilo.

We have an Innowalk machine on loan which enables Danilo to move his legs and build up his fitness. The machine helps improve his circulation and promotes his bowel movement. It also helps prevent physical complications such as fractures and deformities in his spine. We add a certain quality to his life which helps to reduce the number of hospital visits required.

Movement is important for all healthy people and so too for children like Danilo. Movement is healthy, movement is enjoyable and it helps keep his body in better condition. Unfortunately this isn’t acknowledged by our care system and this important physical aid, which is essential for Danilo, is not supplied or funded. 

Do you take Danilo outside?

At this point in time Danilo is not allowed outside. We don’t want to take any risks. Prior to the Corona outbreak we would have taken Danilo on regular walks to the park. We also used a contraption called an ‘Upsee’ to carry out some exercises with Danilo outside. 

How often do you grocery shop?

Grocery shopping is necessary however we have reduced the frequency as the virus is lurking everywhere , especially in Supermarkets where many people go and where you come in contact with many surfaces.  Even a disinfected trolly can still carry risks. Prior to the crisis we were always advised not to shop with a trolley as you end up over buying! This theory is true unfortunately which is good for the supermarkets.

In what way has the Corona virus influenced your work?

As previously mentioned, our work has a direct link to the Corona virus. In the medicine production sector there has also been an element of over stocking on supplies to ensure ongoing production. The demand for disinfectants has significantly increased and with it the demand for alcohol and other chemical components. There is a realistic threat to the availability of certain reagents needed for the Corona tests. 

What is your biggest challenge?

Our biggest challenge is maintaining Danilo’s health and the health of all his carers. The health of Ivana’s parents is also a concern as they belong in the high risk category due to their age and medical condition. Another worry is what the future holds in terms of social interaction whenever the virus is under control. Will we be able to hug each other again? Or will we have to find other means to express our affection? 

Willy’s children and grandchildren live nearby but the distance appears much bigger at the moment and the relationship will need to be rebuilt and rediscovered. The children and grand children (especially the youngest ones) have had too few cuddles from us as a result of this crisis which we will need to make up for later ;)

Can you tell us more about crowdfunding?  

The current Innowalk we have on loan is becoming too small. That is why we have started to raise money for a newer larger model. The exercise is essential for Danilo. On our website and our Facebook page (Danilo in beweging) you can read more about it. We had planned several fund raising activities which we have had to cancel due to the Corona virus. There will be a lovely mother’s day event on our Facebook page soon.

We are also starting up the ‘Danilo foundation’. We are hoping to be able to provide Danilo and others like him with facilities that are not provided by the current health care system both now and in the future. 

Do you have a top tip for our readers for these unusual times?

As we spend more time at home we (re)discover things we suddenly have more time for such as reading. Ivana would like to recommend a book called ‘Blindness’

It’s a story about a town where everyone becomes blind except for 1 woman. It describes the many changes , public reaction and turmoil than follows. Much like the situation we find ourselves in now.