Small elmer's got a 40 disease - a family struggles coping on the edge: we Live in a Elmer's terms one day at a time

In finland there are thousands of severely disabled and sick children whose families are struggling from day to day tired of his extreme limits. One lion parent is a year and a half old Elmer's mother, Lisa, Wes, according to which the worst of the tick families in everyday life is a constant support. MINNA noble danger

November on Wednesday, Lisa Wes is the way to Tampere university central hospital home from Urjala. He's gonna go get himself more clothes and overnight accessories, for routine surveys at the conclusion of Elliot was taken to the ward inside. It is not in itself anything new, because the family-Wes spend a weekly average of 2-4 days TAYS:issa.

Elliot is uusioperhe we five children. We expect healthy children, as he also was born. Immediately after birth Elmer was found, however, breathe poorly and we had a few days keskolaan. There it was thought that his lungs just weren't yet developed enough and we get home, Lisa Wes told me.

a couple of weeks after the family returned with the baby to the hospital for a routine inspection, which awakened the suspicion of something more serious.

- after Elmer's life has been one study, and it is still not clear what the cause of all her illness. Elmer fudd is mm. laryngomalasia i.e. congenital laryngeal and pharyngeal muscle building defect, bad gastroesophageal reflux disease, hypotonia, i.e. muscle weakness, congenital water of the kidney and nearly 40 other disease. He's feeding peg-tube through, which is, fortunately, considerably easier than the previous nasogastric tube with sumplaaminen, Wes sighs.

paper war

many of the illnesses in spite of Elmer fudd is a good windy and sunny little boy. His mother caregiver age was self-evident.

- we Live in a Elmer's terms and one day at a time. Actual daily life is actually not, because tomorrow and Elmer's condition changes, you never know. Parents siblings is sometimes heavy, when the mother may have to leave with my brother unexpectedly to the hospital and stay there for the night. Although the 10 - and 12-year-old children understand very Elmer's disease and I love you very much brother, remain they between force too received less attention, Wes frets.

Good friends and family support network has been in the family its weight in gold the more expensive. It allows children to be able to live a normal school, and hobbies-packed daily life. The family of the eldest child already living in their own homes.

But it's annoying that if the evening had few hours time to be parents with children, so that the time goes all kinds of flag patches. All support paper you have to fill manually and to tell and to justify the same things many times and often to different parties. Anything also does not tell clearly what kind of support the ill child and his family is entitled to. All the information I can find myself and the best things usually survive by asking others in the same situation from, Wes huff.

1500 euro drugs

Earlier in the autumn, the family was momentarily in trouble, when Elmer one month medicines the bill raised 1500 euros.

I Called on, and I got medical bills to cover income support. They said that I need to first apply for a housing subsidy, because only after the income support application can be processed. I know that housing assistance is not coming, but I still had to do the application and find out all the family income and expenditure. It feels extremely frustrating.

- Fortunately, we live in Urjala, such as in small municipalities, where the processing times are short and people know each other almost personally. In large cities, many caregivers are forced to choose to get their decisions and to make further explanations after another, Wes told me.

for Example, applying for a job or offer of work I receive is not many sick or disabled child in the family at all simple.

MINNA noble danger

- If the child should be sent to school and receive there, not eight to four working absolutely possible. In all municipalities, however, this is not understood and the child's caregiver when the parents can get in a bad financial straits.

the Unexpected pest

Lisa Wes hope, that the child needs to support searching for to be successful in the future, one-stop season.

- Also informal care productivity valuation would rise. Many times the informal care capacity began unexpectedly and without being asked, but in spite of it is done with great love of children or spouse. The deputy is not and the job is scheduling around the clock.

- Many of the caregiver's waking up at night every couple of hours, but despite that the day is too tired to continue, as well as nursing that the relevant required forms of support, tracy. The work received a small compensation and society to achieve the savings in relation to caregiver support network is a lot of room for improvement.

the Case is initially published in December 2017.