In the first part of the summative I introduced a friend of mine Jake Hill who suffers from progeria. I gave a brief background on the disease but I can revisit it real fast just so everyone remembers what it is. Progeria is condition that causes a child’s body to age fast. Most kids with progeria do not live past age 13. A big strength for Jake that I spoke on in the first part of the assignment was how a tightknit family Jake comes from. They are very close and supportive to one another especially to Jake as he is going through his battle with this terrible disease progeria. A huge concern for Jake is always trying to remain healthy and continue to stay active as possible. Also, another concern Jake’s family has is that he will not make it see his next birthday based on the life expectancy of progeria. Jake does not look at his life that way he lives everyday to the fullest and knows he will not be able to live his full life.
One intervention that has done since he has been a younger child is physical therapy. Jake and his family were first referred and recommended to give physical therapy a try by his doctor. Even though it is not proven the physical therapy is effective for children who suffer from this disease, most children should receive it to work on strengthen their body. It is recommended if a child who has progeria is involved in physical therapy, they told try to have physical therapy three times a week. (Rodriguez 2010) physical therapist work use adaptive equipment and orthotics that are appropriate for the child participating in physical therapy. Jake has said he enjoys doing the exercise and activities with his physical therapist. Physical therapist also able to direct the child and their families to local activities like swimming or another physical activity they may be interested in. Another intervention is therapeutic exercises. Doing range of motions exercises could be very helpful to joints. It is said this should be performed at least twice a week for improvement in bodies. (Eriksson 2010) Performing the range of motion exercises is recommended and children who have progeria find it to be enjoyable. Children that suffer from progeria may need the access of mobility devices such as motorized wheelchairs. It is recommended that if a child does have a wheelchair it should be a motorized wheelchair because using a manual wheelchair would be much more difficult due to upper body extremities. Keeping children involved in physical activities who have progeria is also important and can be beneficial. By doing this it keeps the children interacting with other children and being involved in physical activities. Occupational therapy that could be very beneficial is occupational therapy. Participating in occupational therapy will focus on working on fine motor skills for the child with progeria. An occupational therapist may have the child they are working with try writing and copying something, getting dressed, using scissors to cut something, and feeding themselves. It’s recommended that a child suffering from progeria is in a support group along with their families. (Drugs.com, 2020) Being in a support group with others who may have this disease make it easier to talk to about everything they are going through daily. Having a therapist may also beneficial as well. It may help having someone to talk to and be able to express what you are going through one on one.
One of the local resources that I was able to find while looking for resources in the Pittsburgh was the progeria research foundation Pittsburgh chapter. There are different chapters throughout the United States, and they are to help raise public awareness and partake in local fundraisers. The goal when forming these different chapters was to develop treatments and find a cure for progeria. Another local resource that I was able to find, and I thought that would be beneficial was Children’s Hospital in Pittsburgh. Children’s Hospital works with different diseases and illnesses that are strictly based on children.
