They currently live in a very small house with two bedrooms and a single bath. The current owners, quite unexpectedly, have decided to sell the property and gave short notice that they need them to be gone.
Stability is important and special accommodations are required for Ethan. They are having difficulty finding a rental that would suit their needs let alone one they can afford. There is a waiting list of over 2 years for low income housing.
There are, however, houses on the market they could afford purchasing except for down payment, closing costs and necessary repairs. They have been selling what they can of their belongings in preparation for an extended stay hotel. It is my goal, however, to raise enough to get them into a home and make the necessary improvements as soon as possible.
Adequate housing for Ethan would ideally include:
-separate bedrooms for Ethan, his sister Sara and his parents.
-Space to hold Ethan's Speech, Physical and Occupational therapies
-Safe play areas for him, both inside and outside
-Separate bedrooms for himself and his sister. Perhaps even one for me when I visit.
-Alarm and monitoring system for Ethan's safety. One that will alarm when he is some place he shouldn't be or goes outside without anyone knowing.
-Space for producing the things they make and sell.
They have experienced extreme stress caring for Ethan. He is 4 ½ and has a severe heart condition where half of his heart didn't properly form (Hypoplastic Left Heart Syndrome). This condition is treated through a series of three open heart surgeries.
They spent 10 months in the Ronald McDonald House, the first 6 of which Ethan was in the Cardiovascular ICU of Phoenix Children's Hospital. The stresses of a hospital and uncertainty of Ethan's condition has had a lasting strain on them.
Their daughter, Sara, has done well through all of this; staying with me or her other grandparents through those first 10 months. It took strength I can’t imagine having at her age: being unsure of when her family would be home and remaining in school through such uncertainty.
Ethan requires close attention. He has experienced delays in development and has recently been diagnosed Autistic. Ethan has great difficulty communicating, only using about ten words and a few signs. Being uncertain of what exactly he needs or feels causes frustration to his parents and himself. He'll act out because he knows no other means of communication.
Ethan has therapies in home most weekdays as his medical fragility has made regular schools unsafe. He was enrolled for only a short time last year. He would make it to school for a day or two, get sick, and then be out for a week. Sometimes severe enough to require a hospital stay while he recovered.
Ethan has been flown by helicopter twice to Phoenix Children's Hospital due to severe seizures. He is medicated now and hasn't had any recently. The possibility is always there however.
Carl too has epilepsy and 6 years ago had surgery for it. The seizures have, for the most part, stopped occurring. A challenge that comes with it is that short term memory and speech are affected. It is essential he takes notes. Otherwise, he can forget details of what was said or done. He gets lost quite easily and uses GPS in the town he's lived for over 7 years.
It was difficult to convince them go fund me was appropriate for their situation. They haven’t relied on others to this point but their situation is unexpected and sudden.
Anything you can do to help is greatly appreciated. It is not easy for them to ask but they have allowed me to. They deserve this.
- jill julian-clay buddy
- Dorothy Roach
- ClayBuddies Member
Organizer and beneficiary
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