Lina_100

MY STORY

Lina at summer 2018 ​

This is our Lina. At the first sight, she is quite an ordinary girl with no signs of health issues. On the other hand, her beginning was anything but fairytale. She was born, along with her twin sister in 2014, as an extremely premature child (born in 24th week of pregnancy). She was 31 cm long and her weight was only 620 g. At the very moment she was born, she began a tough struggle to survive, going through a lot of pain, absence of her parents and struggling through many complications. After serious complications and surgery her fraternal twin sister died 13 days after birth.

Lina on the day she was born - 25. 12. 2014

The extreme premature birth with child delivery complications followed by aggressive therapy, left Lina with serious health issues. She suffered from brain bleedings, bowl dysfunction, heart problems (opened the ductus arteriosus, aslo called the ductus Botalli) and gram-positive bacterial infection (S. Aureus, E. Coli in E. Faecalis). Acute respiratory distresses lead to intubation. Lina still has many respiratory problems with mucus. She was artificially ventilated until she was 46 days old and developed a chronical lung disease (so called bronchopulmonal dysplasia). We left the hospital after many complications and problems which are still part of our lives today.

The whole situation brought a lot of pain and fear from the unknown in our lives. Predictions were very unstable. It took three and a half months of hospital care, long drives to the hospital and back home and waiting to hold Lina in our arms. We were sitting by the incubator, talking to our little girl, singing to her. We were doing everything to give her the warm feeling of our presence.

Looking at Lina all wrapped up in tubes, covered in bruises, having a nasogastric tube in her nose, wired with tubes from her mouth to the lungs was heart breaking. You never get used to these kind of sights. They stay in your subconscious and mark you for life. Instead of Lina’s voice, we only heard the sounds of machines that monitored her oxygen level. We flinched with every single alarm that went off. Our greatest fear was the possibility of respiratory failure. To see our girl being resuscitated had become our greatest fear.

What are the complications like?

Lina appears to be likeable and lively girl, but underneath this image, she hides severe traumas, pain, disorders and health issues:

  • neurological disorders with possibility of cerebral palsy (as a consequence of the brain hemorrhage)
  • sensory disorders with proprioceptive issues (poorly perception of her own body)
  • development delays in different areas (locomotor, cognitive, fine motor skills, social and emotional, speech, language and mental)
  • eating disorders with hypersensitivity reactions
  • oral cavity problems
  • symptoms of autistic spectrum disorder and ADHD
  • dependency in every aspect of life including severe speech disorder (non-verbal communication)
  • health issues like  immunodeficiency, bowel disease, poorly kidney function, allergies and food intolerance, constant vomiting)
  • decelerated motor development (spastic issues, hypotonia, hypertonia).

Lina is entirely dependent on many areas like hygiene, clothing and feeding. She needs constant care, 24 hours a day.

Seemingly very patient and positive child lives in constant pain and indisposition which has robbed her of comfortable childhood. All the benefits that are taken for granted for most children are unreachable for Lina. Because of her problems, she spends most of her time at our home.

What are our current actions?

In Slovenia, the options for children like Lina are very limited. Our current prime care is Lina’s food. We look for products that do not cause allergies and food intolerance. We stimulate her digestion with enzymes. We stimulate her nourishment with different dietary supplement.

Lina_3_zgodba

Lina attends occupational therapy and speech therapy. The sessions take place in so called “sensor room” which enables children with special needs to be a part of floortime method. We created an improvised type of sensor room at our home, where both parents train Lina using the instructions from the speech therapist, occupational therapist and rehabilitation teacher. We train Lina several hours daily. However, not all this effort is sufficient, because the injuries are too large. The therapy she needs must be considered as a whole – it must include types of therapy which enables brain and bowel regeneration.

What would help?

Lina is our only child and we wish two things for her – to be independent, happy, healthy and finally live her life not being deprived from things that are taken for granted to other children. We wish for her not to be dependent on the state budget, but to be able to take care of herself.

We are very optimistic about her future – her independence and health. The number of children that succeed is constantly rising. There are many modern approaches and therapies that make the healing process successful.  Hyperbaric oxygen therapy including hyperbaric chamber and of stem cells treatment are therapies that make wonders in the healing process and have no side effects and regressions. Both therapies combined are known as very effective. Including hyperbaric oxygen therapy during the process of clinical application of stem cells raises the activity of stem cells and also enlarges concentration of the body’s own stem cells. The tradition of stem cells therapy is well accepted in foreign countries. Until this day it helped many families from all around the world. We would like to offer it to our only daughter Lina in order to make her an independent, healthy and happy person.

Stem cells are the body’s natural reservoir – stocks of specialized cells that have been used up or damaged. Some specialized cells, such as blood and muscle cells, are unable to make copies of themselves through cell division. Instead they are replenished from populations of stem cells. In abroad they use this ability to heal gastroenterology issues like inflammatory bowel disease, neurological issues and serious brain damages (which were present in our Lina’s situation as intraventricular hemorrhage).

Transplanted stem cells have positive effects on the whole body system and organs, starting in the brain. Their main goal is to start a brain development, which significantly reduces delays in child’s development (our Lina is an example of a huge development delay). Stem cells aim parts of the brain that has been damaged and are formed to regulate memory, concentration, attention, speech etc. Those functions are essential in developing dependence, communication, learning, occupational skills etc.

Here are some other positive effects of stem cells therapy:

  • they power blood and oxygen flow in the brain and enable the substitution of damaged neurons with new ones,
  • they improve regenerative ability of damaged brain – they replace damaged cells with new ones,
  • they have an impact on sensor centers in the brain, which are formed to manage different sensor stimulus and prevent defects on areas like nourishment, digestion and speech ( these are Lina’s healthy issues),
  • they improve metabolism and immune system, regenerate damaged cells and tissue, and normalize internal organs functions (liver, kidneys) – again, our Lina’s large health issue.

Expectations after therapies

We expect improvement on neurological area (development delay, dependency, eating and speech disorders, sensory problems, proprioceptive issues, etc.)

In our Lina’s situation, we expect:

  • long-term food tolerance,
  • reduced sensory hypersensitivity,
  • improved digestion,
  • improved verbal communication,
  • improved self – care abilities,
  • stronger concentration,
  • activation of learning process,
  • gradual achievement of predictable development milestones etc.

Stem cells therapy is also effective with cerebral palsy symptoms. It reduces hypertonia symptoms in extremities (spasticity), stimulates mental development (that leads to independency) and improves social skills.

We mainly expect positive effects of stem cells on Lina’s speaking skills. It’s the area that enables people to interact with each other. Through social contact, people are able to improve their motor skills, cognitive development, eye contact, learning ability, self-awareness, social skills etc.

The expected improvements on gastroenterology areas (cronical bowel desease):

Stem cells therapy has many positive effects on bowel disease patients. In our Lina’s situation, we expect improved defecation control, improved digestion (with no signs of indigestible food in her stool), and reduction of slime in the stool and improved stool consistency.

 

To sum up the essence – stem cells therapy would improve Lina’s neurological, gastroenterological and general health state and would play a crucial part on her way to dependency and successful development in all areas.

 

We wish for our Lina to be independent one day, not relying on different institutions and state budget. We believe you understand our concern about her future.

What will happen to her, when we die?
Where will they take her?
How is she going to feel there?
Is she going to be taken care of?
It is heart breaking to go through all kinds of scenarios.

One stem cells therapy costs 10.000 euros. The number of therapies cannot be predicted. Experiences with this type of therapy show, that patient must receive more than one stem cells therapy. Further on, the expense for hyperbaric oxygen therapy including hyperbaric chamber is 600 euros (10 visits).

 

My husband is the only one employed in our family. Without your help all therapies remain distant fantasy. We wish and hope to reach them with your goodness and humanitarianism.

For our little fighter Lina. 

 

You can follow our Lina on: www.giveyourhelpinghand.eu

We thank you in advance for your helping hand.

You can transfer your contribution for Lina to account below:

Checking account: 0510 0801 5567 619 

BIC/SWIFT: ABANSI2X (Abanka)

Reference number: 29365

Intent: Za Lino

Checking account open at Škofijska Karitas Celje